1-6 day. Yesterday was a pretty crappy day. Had an appointment with Dr. Debo, the surgeon who removed the mass out of my neck for a check up. Our appt. was for 0900 and I'd been feeling nauseated all morning, so just moving about without getting sick was a chore. We made it to the appointment ok, then headed back home, where I ended up sleeping the rest of the morning and afternoon. Had another appointment with the Oncologist to get the pump removed at 1500. I woke up about 1400 and we left at 1430, still nauseated and feeling wiped out. Got the pump taken off (yeah!), but still have that nauseated feeling and the feeling of being totally wiped out. Spent the rest of the afternoon and all evening on the couch dozing. Think I finally went to bed about 8pm last night and I figure I spent all but about 3 hours on the couch snoozing. It's hard to explain, but I just feel drained and sick to my stomach. My back and legs are starting to ache, probably from lying down too much.
Got up this morning (Saturday), and currently waiting on a phone call from the Home Care providers, as they are supposed to make an appointment to come out and change the dressing on my PICC Line bandage, then we have an appointment to get my Neulasta shot this afternoon.
I'm feeling a little better today, but still have that drained out feeling. Marjie made me some scrambled eggs and bacon, which tasted good, but sent me to the bathroom almost immediately. My mouth has a weird feeling and taste to it.........This is some bad sh*t!
I wouldnt' wish this on my worst enemy!
Hopefully, this afternoon or tomorrow I will have a little better news to report, but right now it's not going so good. I'll sign out for now.
Thanks again for everyone's support and if I don't answer you email directly, know that I did see it or at least someone read it to me.....
Saturday, November 18, 2006
Thursday, November 16, 2006
16 November 2006
Here we are on the morning of the ole 1-4 day and doing so so I guess. Just wanted to thank everyone who's called, sent email's and posted to the blog. It means a lot to me to know you are all out there praying or thinking about me.
I'm doing okay or as as good as can be expected. I've had minimal side effects with the exception of getting tired very quickly throughout the day and a little nausea during the evening.
My routine has been getting up around 0700 and trying to do a little work on the computer, then get something to eat and take a few meds that the docs have prescribed for me. Shower comes next. That is a real pain the ass, as I have to have Marjie tape up my the bandage covering this PICC line really good on my right arm so it won't get wet, hang the Chemo Pump outside the shower so it won't get wet, then I inch my way in there and shower as best I can keeping right arm lifted out of water spray while also trying to keep the Feeding tube (PEG) tube dry (that doesn't work). We put one of those new shower heads on that has a 6' portable handle which seems to be working much better than the regular shower head, so bottom line is that even though it's a bit of a hassle, I still get to take a shower everyday.
After my shower, Marjie flushes the PEG and changes the dressing on it and I get dressed and ready for whatever we have going on during the day.
Ran some errands around town on Tuesday for a couple hours and it wasn't so bad, but after a couple hours I began to get pretty tired and started feeling nauseated, so we headed home and I spent the rest of the evening on the couch.
Same routine for yesterday except instead of running errands, we took Coho for walk and finished refilling the hot tub.
Seems that if I take it easy a little more often, it's not to bad dealing with side effects. I'm trying to eat small meals and drink plenty of fluids throughout the day rather than just a couple bigger meals like usual.
I guess time will tell as far as what I'm to expect with the side effects. Haven't lost any hair yet, no tingling of the toes or hands. Every once in a while I thought I've experienced a tingling in my mouth...not sure if I'm just imagining it or not, but who knows.
Tomorrow at noon, I go to see the surgeon that removed the mass out of my neck. He's a great doctor and wants to continue seeing me to just to keep up with the situation. I think this will be the last time I see him for another month or so, but he wants to stay in the loop.
At 3pm I go back to the chemotherapist, Dr. Atienza and get this pump taken off me for a couple weeks. We talked to his nurse yesterday and the plan is for me to build back up white blood cells for the following two weeks, then start on the 4th of December with the next dose of Chemo like I'm going through now.
So if I have it right, it's one week of chemo, two weeks off, 1 more week of chemo, two weeks off, then we start the radiation/chemo...but that's another month down the road.
I'm gonna close for now, hope this makes some sense....Time for some breakfast and need to get going on the morning routine...Thanks again for everyone's support! Your thoughts and prayers must be working cause I'm still here doing ok.
I'm doing okay or as as good as can be expected. I've had minimal side effects with the exception of getting tired very quickly throughout the day and a little nausea during the evening.
My routine has been getting up around 0700 and trying to do a little work on the computer, then get something to eat and take a few meds that the docs have prescribed for me. Shower comes next. That is a real pain the ass, as I have to have Marjie tape up my the bandage covering this PICC line really good on my right arm so it won't get wet, hang the Chemo Pump outside the shower so it won't get wet, then I inch my way in there and shower as best I can keeping right arm lifted out of water spray while also trying to keep the Feeding tube (PEG) tube dry (that doesn't work). We put one of those new shower heads on that has a 6' portable handle which seems to be working much better than the regular shower head, so bottom line is that even though it's a bit of a hassle, I still get to take a shower everyday.
After my shower, Marjie flushes the PEG and changes the dressing on it and I get dressed and ready for whatever we have going on during the day.
Ran some errands around town on Tuesday for a couple hours and it wasn't so bad, but after a couple hours I began to get pretty tired and started feeling nauseated, so we headed home and I spent the rest of the evening on the couch.
Same routine for yesterday except instead of running errands, we took Coho for walk and finished refilling the hot tub.
Seems that if I take it easy a little more often, it's not to bad dealing with side effects. I'm trying to eat small meals and drink plenty of fluids throughout the day rather than just a couple bigger meals like usual.
I guess time will tell as far as what I'm to expect with the side effects. Haven't lost any hair yet, no tingling of the toes or hands. Every once in a while I thought I've experienced a tingling in my mouth...not sure if I'm just imagining it or not, but who knows.
Tomorrow at noon, I go to see the surgeon that removed the mass out of my neck. He's a great doctor and wants to continue seeing me to just to keep up with the situation. I think this will be the last time I see him for another month or so, but he wants to stay in the loop.
At 3pm I go back to the chemotherapist, Dr. Atienza and get this pump taken off me for a couple weeks. We talked to his nurse yesterday and the plan is for me to build back up white blood cells for the following two weeks, then start on the 4th of December with the next dose of Chemo like I'm going through now.
So if I have it right, it's one week of chemo, two weeks off, 1 more week of chemo, two weeks off, then we start the radiation/chemo...but that's another month down the road.
I'm gonna close for now, hope this makes some sense....Time for some breakfast and need to get going on the morning routine...Thanks again for everyone's support! Your thoughts and prayers must be working cause I'm still here doing ok.
Tuesday, November 14, 2006
13 November 2006 First day of Chemotherapy
Today is the first day of chemo so I’m calling this 1-1 day to signify week 1, day 1.
Woke up this morning at 0400 tossing and turning so I suspect it’s from the anticipation of the unknown of what’s going to happen today. Marjie also woke up at the same time and suspect it for the same reasons and also the fact that she is still a little jet lagged from her cross ocean plane trip from Egypt.
Marjie got up and decided to start one of her workout tapes and then take the Coho for a walk, so I finally got this blog going. I started at the beginning and hope to get caught up in the next couple days, and then it will just be a daily update of what the hell is going on with me.
Anyway, I worked on the blog from about 0400 till almost 0800 and realized that I need to start getting ready since we needed to be at Virginia Oncology Associates at 0900.
Took a shower and headed downstairs to eat a quick breakfast consisting of an English muffin with peanut butter and a banana with some apple juice. While I was eating Marjie flushed and changed the dressing on my feeding tube. Once done with that, I packed my backpack with a blanket, ear phones for my cell phone which is also a MP3 player, a small bag of crackers, PC World magazine and a book.
Arrived at the doctors office at 0910 and waited in the waiting room till 0930 when we were called in to the chemo room as I call it. This room consists of about 12 Lazy Boy leather recliners that are spread out along the walls. Next to the recliners are portable IV tube hangers on wheels with some kind of computer that the nurses can control how much IV fluid they are transferring into you at a time. We were told last week that if all the recliners weren’t taken that Marjie would be able to sit with me rather than having to get a folding chair to sit in for the day. As it turned out, there were 3 other patients getting treatment, so it left lots of open chairs and Marjie was able to kick back next to me all day.
The nurse came over and explained what was going to happen today and it basically goes like this. I will be receiving numerous chemicals/medicines/anti-nausea/hydration fluids in a series through IV bags which will attach to my PICC line.
First thing was for me to take another pill called Emend, which is an anti-nausea medicine. This is taken on the first day of chemo treatment and its 150mg, then I’ll take one the second day 80mg and another on the 3rd day after treatment 80mg.
First IV bag hooked up to the machine and then to me was yet another anti-nausea medicine called Aloxi .25mg.
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Next IV bag was what the nurse called a hydration bag which was 1000ml of saline.
Next IV bag was 250ml of Magnesium Sulfide 50% 500mg/ml. (This is to offset losses from the next drug called Cisplatin (Platinol).
Next IV bag was the real deal chemo drug 1000ml – Cisplatin (150mg) plus Mannitol 2,500mg. (This bag took over an hour to drain into me.
Next IV bag was another Chemo drug 150mg of Taxotere.
This all started about 0930 and the last drop went in approx 1545….what a day!
The nurse comes back in with the final drug 5-FU (Fluorouracil). This is a drug that needs to be dispensed for 96 hours continuously. The way this will work is that I will carry a fanny pack with a pump in it that is connected to the IV fluid bag which will inject through my PICC line 7,880 mg which is 157.6cc’s of 5-FU (Fluorouracil) over 96 hours at a rate of 2cc’s an hour into me.
Man, this is a real joy! I now have this freaking feeding tube coming out of my stomach, a PICC line installed into my upper right arm with two medicine ports dangling out, and connected to one is a tube going to an IV bag which is connected to this pump that I have to carry continuously for the next four freaking days. This damn thing can’t be more than 3 feet from my body and can’t get wet. Sheesh!
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So to recap for the day, I basically sat in a comfortable recliner reading magazines, listening to Dire Straits and Kenny G, wrapped in my own personal blanket very comfortable. The drugs going into me did not hurt and I really didn’t feel anything at all. The PICC line worked very well and because of it I didn’t have to have any needles today poking into me. When we were all done and the pump was turned on, Marjie and I left.
My next appointment is at 1500 on Friday to have the pump removed and another appointment at 1455 on Saturday for a shot of NUELASTA. This is the drug to bring your white blood count back up.
Headed home with Marjie driving this time. Think I’ll be a passenger for the next couple months.
Got home and Marjie had a roast in the crock pot for dinner cooking. Went out in the back yard and did a little cleaning up while Marjie and David finished cleaning the hot tub.
Came back in feeling good, ate a good dinner and kicked back on the couch and watched a little TV. So far, I’m feeling no side effects and all is well.
Went to bed at 2130 and watched TV in the rack till about 2230.
Goodnight!
10 November 2006 PICC Install
Well, Marjie flew home last night on Emergency Leave and will be able to stay here with me through this whole ordeal.
Thanks again to my folks who unselfishly flew in from Tucson, AZ to be with me, take notes at Doctors meetings, cook dinners, clean house and give me moral support. I really appreciate that!
Mom and Dad will be flying back to Arizona after having passed all the information to Marjie.
Arrived at Chesapeake General Hospital Friday at 1130 for the PICC tube installation. It went very well and had little pain during the surgery.
The PICC was put in by a specially trained nurse, in an outpatient department on the ward. It was put in using a local anaesthetic, so that you do not feel any pain.
First, the skin in the area where the PICC will be inserted is numbed, using a special anaesthetic cream. When the skin is completely numb a needle will be inserted and then removed as the PICC is threaded through it into the large vein which leads to your heart. This did not take long and was painless. The PICC is held securely in place by a transparent dressing. I then had a chest x-ray to check that the end of the tube is in the correct position.
A PICC is a long, thin, flexible tube known as a catheter. It is inserted into one of the large veins of the arm near the bend of the elbow. It is then pushed into the vein until the tip sits in a large vein just above the heart.
The space in the middle of the tube is called the lumen. The tube has two lumens (known as double lumen). This allows different treatments to be given at the same time. At the end of the tube outside the body, each lumen has a special cap to which a drip line or syringe can be attached. There is also a clamp to keep the tube closed when it is not in use.
The PICC line can be used to give you treatments such as chemotherapy, antibiotics and intravenous fluids and feeding. It can also be used to take samples of your blood for testing. You can go home with the PICC in and it can be left in for weeks or months. This makes it possible for you to have your treatment without having to have needles frequently inserted into your veins. This may be particularly helpful if your veins are hard to find or have been hardened by previous chemotherapy treatment.
Biggest issue that I'm faced with is the fact that the dressing cannot get wet, which is going to make taking a shower even more difficult since I now have to deal with the PEGG feeding tube and now this.
08 November 2006 Planning meeting with Radiologist
Went to “planning session” at Dr.Amin’s office this morning – met and talked with Dr.Sinesi at length. The treatment plan has changed.
First of all, Dr. S. emphasized the importance of being able to keep up nutritionally during treatment, saying that the PEG gastric tube is best for this. Obviously nutrition by mouth is best and easiest, but as treatment progresses Dave will tend to develop mouth sores which can make eating difficult, and maintenance of proper nutrition is essential to his health.
Again the Dr. emphasized that radiation is for local treatment - tonsil and lymph nodes in the neck. Basically the radiation will treat an area (on both sides) from the top of the jawbone to the collarbone. Chemo is administered intravenously and the drugs flow throughout the body via the blood system. CAT scans can’t pick up tiny, microscopic cells that might be floating around, but chemo can attack those.
Chemo + radiation has a synergistic effect that enhances the effects of both – a 2+2=5 situation.
Dr.Atienza has been doing further research and both doctors agree that the cutting edge, “gold standard” of treatment would be to do two sessions of just chemo first, and then progress to the chemo + radiation 7-week program.
After the initial chemo treatments with Dr.Atienza, Dave will return to Dr.Sinesi and Dr.Amin for 2-3 days of planning – pictures, measurements, CAT scans, fitting of the mask – prior to beginning radiation treatment. It is probable that the “picture” at that point will be different from what it would be today – therefore it is prudent to wait till after chemo for this planning.
Dr.Sinesi told us to go directly to Dr.Atienza’s office to finalize discussions of the chemo plan, which we did.
After a long wait, Dr. Atienza came in to explain further all of the above, and to further explain the chemo treatment. Dave will undergo two sessions of chemo treatment over a three-week period. Raw data suggests that this plan is more effective and potentially easier for treating tonsil cancer. The “wrinkle” is that with the three drugs they will be using, there is some little risk.
Plan is now to start Chemotherapy on Monday 13 November. But first, I have an appointment for Friday the 10th to have the PICC installed.
First of all, Dr. S. emphasized the importance of being able to keep up nutritionally during treatment, saying that the PEG gastric tube is best for this. Obviously nutrition by mouth is best and easiest, but as treatment progresses Dave will tend to develop mouth sores which can make eating difficult, and maintenance of proper nutrition is essential to his health.
Again the Dr. emphasized that radiation is for local treatment - tonsil and lymph nodes in the neck. Basically the radiation will treat an area (on both sides) from the top of the jawbone to the collarbone. Chemo is administered intravenously and the drugs flow throughout the body via the blood system. CAT scans can’t pick up tiny, microscopic cells that might be floating around, but chemo can attack those.
Chemo + radiation has a synergistic effect that enhances the effects of both – a 2+2=5 situation.
Dr.Atienza has been doing further research and both doctors agree that the cutting edge, “gold standard” of treatment would be to do two sessions of just chemo first, and then progress to the chemo + radiation 7-week program.
After the initial chemo treatments with Dr.Atienza, Dave will return to Dr.Sinesi and Dr.Amin for 2-3 days of planning – pictures, measurements, CAT scans, fitting of the mask – prior to beginning radiation treatment. It is probable that the “picture” at that point will be different from what it would be today – therefore it is prudent to wait till after chemo for this planning.
Dr.Sinesi told us to go directly to Dr.Atienza’s office to finalize discussions of the chemo plan, which we did.
After a long wait, Dr. Atienza came in to explain further all of the above, and to further explain the chemo treatment. Dave will undergo two sessions of chemo treatment over a three-week period. Raw data suggests that this plan is more effective and potentially easier for treating tonsil cancer. The “wrinkle” is that with the three drugs they will be using, there is some little risk.
Plan is now to start Chemotherapy on Monday 13 November. But first, I have an appointment for Friday the 10th to have the PICC installed.
07 November 2006 Home Health Care Provided
Home Health care nurse from Bon Secours (related to Maryview Hospital) came to show him how to care for wound and how to flush PEG tube:
Wear rubber gloves to maintain sterility
Remove old tape and dressing.
Soak gauze pad with betadine and use to clean all around site, especially around edge of circular plastic piece.
Then apply triple antibiotic ointment to area, squeeze under edge of circular plastic piece.
Coil up tube and appliance and hold in place while you-
Recover with fresh dressing and tape in place.
To flush tube – twice a day with 200 cc water using syringe supplied.
Take up 70 cc water in syringe, undo clamp on tube holding tube upright, flush through first 70 cc water. Re-fasten clamp to avoid backwash. Repeat this procedure twice, using only 60 cc water the third time. Be sure to unclamp and reclamp tube for each “push”. Getting a little air bubble into the line is not a problem – just would cause a little gas..
If there should be a little debris or particles apparent in the tube, can use Sprite or ginger ale for the flush – the carbonation will help to clear out any debris in the tube….this would only occur when the tube is being used for actual supplemental feeding, probably not at this point.
For second flushing of the day, it may be possible just to gently uncoil tube and pull out from top of dressing, then tuck back in afterwards – to avoid having to reapply tape and dressing each time.
The bottle of normal saline is to use for external cleaning only – do not use to flush tube.
Home Health care provides all necessary supplies – when you are running low on something, let them know and they will bring more out.
06 November 2006 PEG install
Surgery this morning to have the PEG (feeding tube) put in place – went to the hospital (Maryview) at 6:30 – was back in recovery by 8:30. We left the hospital with Rx for Demerol and Prilosec – to Portsmouth Naval Hospital to get these, and the Salagen Rx filled. While there he came close to passing out – chills and sweating – had to get a wheel chair and orderly to get back to the car. Probably due to taking a Percoset at Maryview on, essentially, an empty stomach. Stopped to get a milkshake en route to home and he seems better. REALLY better after phone call from Marjie with flight info!
02 November 2006 1st Meeting Radiation Therapist
Once again, thanks Mom for you input on this!
On Thursday, Nov 2, I accompanied Dave to his appointment with Dr. Biral Amin, the radiation therapist. Again, a very impressive person – a young man, Indian?? But with no discernible accent. He was extremely personable, encouraging, understanding, explained things well.
Side effects Dave will experience include sore mucosal membranes in the mouth and throat, possible difficulty in swallowing, dryness of the mouth, and altered taste sensations.
They will be using IMRT…..defined in one of the booklets we picked up as intensity-modulated radiotherapy, a recent advance that in some cases may spare normal tissues, including saliva glands. The doctors are able to adjust the radiation dose more precisely to the tumor.
He recommends that Dave be followed after treatment by an endocrinologist because of possible trauma (from the radiation) to the thyroid gland. This could be a life-long thing.
He prescribed Salagen, a drug to promote maximum salivary output, to be taken the three days immediately preceding radiation treatment. He requested an immediate “Pre-Radiation Exam” by Dave’s dentist (further explained in the pamphlets), and he was adamant that a feeding tube be inserted by a gastro-intestinal surgeon prior to beginning treatment. Reasoning for this is that it is easier to do that BEFORE treatment begins, and it is important that Dave’s nutritional level be kept at a high state, not allowed to suffer if and when his eating becomes difficult. He also explained that a chemo port, called a PICCline, will be inserted into a vein in the upper arm for chemo administration. (Dr. Atienza had explained this, also.) Both these tube insertions will be done in the hospital under anesthesia, but as an “in-and-out-in-one-day” procedure.
Dr. Amin said the radiation treatment would last 7 weeks, every day Monday thru Friday, about 20-25 minutes per session. At the first session (longer) ---or at the planning session???--- A plastic mesh mask will be fitted - the purpose of this is to help focus the X-ray beams, and to keep his head immobilized during the treatment.
Sequence of immediate future appts – Dental “pre radiation TX exam, GI dr. to insert feeding tube, Planning Session. Dr,s all to coordinate appts and treatment plan.01 November 2006 First meeting with Oncologist
First meeting scheduled with Virgina Oncology Associates, Dr. Daniel Atienza.
Fortunately my Mom and Dad flew in from Tucson Arizona to be with me and help with things around the house till my wife Marjie could return from her deployment in the Mediterranean Sea. Marjie is stationed on a ship that is currently deployed and not scheduled to return till December 6Th.
Here are Mom's notes which is a 100 times better than I could have done. Thanks Mom!
Wed., Nov 1. David Jr. and I accompanied Dave to the appointment with Dr.Daniel Atienza, a short, genial Filipino doctor. He started in to explain the rationale behind chemo/radiation therapy.tumor site only – radiation; tumor + metastasis to a lymph node – chemo. Chemotherapy will (1) enhance the effect of radiation on the tumor and (2) prevent further metastasis of the cancer cells. There is concern about metastasis to the lungs and bones; however, Dave's chest X-ray is clear which is very good. Side effects will include increased sensitivity to sunlight.
The combination of chemo AND radiation enhances the effects of both.
Chemo has the effect of bringing down the white blood cell count (white cells fight infection) so they will keep a close check on his blood chemistry. There is also the potential for hair loss (head, eyebrows, beard, everywhere). Unfortunately the best drug for the treatment of head and neck cancer also had an increased potential for nausea; Dave will be given pretreatment medication of Dexamethasone (Decadron) and Emend for nausea and joint pain. A side effect (of this medication??) may be numbness and tingling in the fingers and toes. This should subside when treatment is complete although there could be some lingering and possibly permanent numbness/tingling. Another side effect is possible loss of high frequency tones in hearing (something the Vigal boys already suffer from!!)
Side effects to the kidney will be monitored – the kidney tends to flush salts from the body (apparently the chemo meds are salts), and yet some salts are critical to maintain…..need to research this a bit more.
He may experience mild anemia, which they can counteract with the medication Procrit.
Another medication they will use is 5-FU (Fluorouracil) – this can cause diarrhea and mouth sores which will be temporary in nature, but still annoying. Several other drugs were mentioned – Aloxi, Emend, I believe these were all anti-nausea drugs.
It will be important to keep Dave’s nutrition at a high level, but eating may become difficult because of mouth sores, decreased saliva output, swelling of the throat, etc. For that reason they may want to insert a feeding tube, to be used when and if eating becomes difficult. The effects of the radiation on throat tissues, both internal and external, are similar to a heavy sunburn, but as radiation continues, internal throat swelling may occur. There are meds to counteract this, too.
Dr. Atienza anticipates a 6-week course of radiation and chemo – both together the first and last weeks, and radiation only in between. He also discussed the drug Ethyol (helps to reduce the occurrence of moderate to severe dry mouth) which will be used to prevent esophagitis and neuropathy in the throat (I’m really having to dig deep for my biology vocabulary!! – we’ll all be a lot more educated by the time we are through with this!) A possible deleterious side effect of Ethyol is a rash, and if he gets the rash, the drug is immediately discontinued.
I felt very comfortable about this doctor – he was thorough, understanding, easy to talk to. Dave asked him for a “guesstimate” of his chances of going through all this treatment and beating the cancer – the doctor said, at least 50-50, which was of course NOT what Dave wanted to hear. Would have to give the Dr. a D- on that particular bit.
He also explained that the surgery for this problem is HUGE – massive loss of tissue in the jaw and neck – and that is why they much prefer to treat the problem with chemo and radiation. He also said that, should the surgery become necessary at some later date, having had the chemo and radiation previously would not have a negative influence on the surgery. Obviously, this is an option we all would hope would never become necessary.
This IS tonsillar cancer, metastasized to the lymph gland. This is ONLY on the left side, which certainly is a plus.
He referred us also to the NIH and NCI websites, also PDQ, and a site called PLWC (People Living With Cancer).
Fortunately my Mom and Dad flew in from Tucson Arizona to be with me and help with things around the house till my wife Marjie could return from her deployment in the Mediterranean Sea. Marjie is stationed on a ship that is currently deployed and not scheduled to return till December 6Th.
Here are Mom's notes which is a 100 times better than I could have done. Thanks Mom!
Wed., Nov 1. David Jr. and I accompanied Dave to the appointment with Dr.Daniel Atienza, a short, genial Filipino doctor. He started in to explain the rationale behind chemo/radiation therapy.tumor site only – radiation; tumor + metastasis to a lymph node – chemo. Chemotherapy will (1) enhance the effect of radiation on the tumor and (2) prevent further metastasis of the cancer cells. There is concern about metastasis to the lungs and bones; however, Dave's chest X-ray is clear which is very good. Side effects will include increased sensitivity to sunlight.
The combination of chemo AND radiation enhances the effects of both.
Chemo has the effect of bringing down the white blood cell count (white cells fight infection) so they will keep a close check on his blood chemistry. There is also the potential for hair loss (head, eyebrows, beard, everywhere). Unfortunately the best drug for the treatment of head and neck cancer also had an increased potential for nausea; Dave will be given pretreatment medication of Dexamethasone (Decadron) and Emend for nausea and joint pain. A side effect (of this medication??) may be numbness and tingling in the fingers and toes. This should subside when treatment is complete although there could be some lingering and possibly permanent numbness/tingling. Another side effect is possible loss of high frequency tones in hearing (something the Vigal boys already suffer from!!)
Side effects to the kidney will be monitored – the kidney tends to flush salts from the body (apparently the chemo meds are salts), and yet some salts are critical to maintain…..need to research this a bit more.
He may experience mild anemia, which they can counteract with the medication Procrit.
Another medication they will use is 5-FU (Fluorouracil) – this can cause diarrhea and mouth sores which will be temporary in nature, but still annoying. Several other drugs were mentioned – Aloxi, Emend, I believe these were all anti-nausea drugs.
It will be important to keep Dave’s nutrition at a high level, but eating may become difficult because of mouth sores, decreased saliva output, swelling of the throat, etc. For that reason they may want to insert a feeding tube, to be used when and if eating becomes difficult. The effects of the radiation on throat tissues, both internal and external, are similar to a heavy sunburn, but as radiation continues, internal throat swelling may occur. There are meds to counteract this, too.
Dr. Atienza anticipates a 6-week course of radiation and chemo – both together the first and last weeks, and radiation only in between. He also discussed the drug Ethyol (helps to reduce the occurrence of moderate to severe dry mouth) which will be used to prevent esophagitis and neuropathy in the throat (I’m really having to dig deep for my biology vocabulary!! – we’ll all be a lot more educated by the time we are through with this!) A possible deleterious side effect of Ethyol is a rash, and if he gets the rash, the drug is immediately discontinued.
I felt very comfortable about this doctor – he was thorough, understanding, easy to talk to. Dave asked him for a “guesstimate” of his chances of going through all this treatment and beating the cancer – the doctor said, at least 50-50, which was of course NOT what Dave wanted to hear. Would have to give the Dr. a D- on that particular bit.
He also explained that the surgery for this problem is HUGE – massive loss of tissue in the jaw and neck – and that is why they much prefer to treat the problem with chemo and radiation. He also said that, should the surgery become necessary at some later date, having had the chemo and radiation previously would not have a negative influence on the surgery. Obviously, this is an option we all would hope would never become necessary.
This IS tonsillar cancer, metastasized to the lymph gland. This is ONLY on the left side, which certainly is a plus.
He referred us also to the NIH and NCI websites, also PDQ, and a site called PLWC (People Living With Cancer).
Monday, November 13, 2006
27 October 2006 Two weeks after surgery
Here are a few pics beginning with before and after. You can see that the scar is getting better and better each couple days.
Returned to Dr. Debo's office for a check up on my surgery and talk further about treatment possibilities. I guess we discussed this last week but didn't put a post about that. Basically, he wants to send me to talk to a Oncologist and a Radiologist and get a second opinion. He feels it would be better to treat with a combination of radiation and chemotherapy rather that go in and do more surgery. He says surgery is still a possibility, but after the other two.
Appointments are made!
19 October 2006 Pathology Report
Here is the pathology report.
A 44-year old male presented with left neck mass. Patient underwent biopsy to rule out lymphoma.
Pre-operative diagnosis: left neck mass
Post-operative diagnosis: left squamous cell CA
Specimens (a): left neck mass (FD)
(b): left tonsil biopsy
Gross description:
A: Received is one appropriately labeled container additionally labeled "left neck mass, rule out lymphoma:. It consists of a 3.2 x 2.2 x 2.2 cm large necrotic lymph node. A small portion of the tissue is submitted as (FSA1). The remaining tissue is submitted in (A1) through (A6). NTR
B: The specimen is received in buffered formalin labeled with the patients name and "left tonsil biopsy". The specimen consists of two portions of brown and tan, soft tissue. This is filtered into a biopsy bad and measures 1 x 0.5 x 0.3 cm in greatest dimensions. The specimen is totally submitted in one cassette labeled (B).
Diagnosis:
A: Left neck mass, biopsy, frozen and permanent section diagnosis:
- Metastatic squamous cell carcinoma, moderately differentiated, focally keratinizing in lymph node. The metastatic focus measures 3.2 cm in greatest dimension. Extracapsular extension is identified.
B: Left tonsil, biopsy:
- Invasive moderately differentiated squamous cell carcinoma.
The pathology report in a nutshell showed squamous cell carcinoma (T1 N 2 a of the left Tonsil.)
A 44-year old male presented with left neck mass. Patient underwent biopsy to rule out lymphoma.
Pre-operative diagnosis: left neck mass
Post-operative diagnosis: left squamous cell CA
Specimens (a): left neck mass (FD)
(b): left tonsil biopsy
Gross description:
A: Received is one appropriately labeled container additionally labeled "left neck mass, rule out lymphoma:. It consists of a 3.2 x 2.2 x 2.2 cm large necrotic lymph node. A small portion of the tissue is submitted as (FSA1). The remaining tissue is submitted in (A1) through (A6). NTR
B: The specimen is received in buffered formalin labeled with the patients name and "left tonsil biopsy". The specimen consists of two portions of brown and tan, soft tissue. This is filtered into a biopsy bad and measures 1 x 0.5 x 0.3 cm in greatest dimensions. The specimen is totally submitted in one cassette labeled (B).
Diagnosis:
A: Left neck mass, biopsy, frozen and permanent section diagnosis:
- Metastatic squamous cell carcinoma, moderately differentiated, focally keratinizing in lymph node. The metastatic focus measures 3.2 cm in greatest dimension. Extracapsular extension is identified.
B: Left tonsil, biopsy:
- Invasive moderately differentiated squamous cell carcinoma.
The pathology report in a nutshell showed squamous cell carcinoma (T1 N 2 a of the left Tonsil.)
16 October 2006 Day of Surgery
OK, today is the day of the surgery. I haven't been able to eat or drink since midnight last night and it's a b--ch not being able to have my morning cups of coffee. Marjie's sister Sarah picked me up at 1130 and we headed to the hospital. Sarah dropped me off and I checked in. The nurse took me to a room and had me undress and put on a surgery gown and then climb in bed. I laid there for about 30 minutes till the nurse came back and started hooking up gear to me. Heart rate monitor on my finger, blood pressure gadget to my arm, and then an IV. They started pumping some IV fluid in me for the next couple hours while I watched TV and waited on Dr. Debo who was doing other surgeries that day. Around 2pm, the anesthesiologist came in and said she was going to give me some "feel good medicine", then the anesthesia.
Boy oh boy is that stuff good! A few minutes later, they wheeled me out and to the operating room. I remember heading out the door and into the passageway, and I asked the nurse what this medicine was supposed to do? because as far as I could tell, it wasn't doing anything. She said that I should feel like I consumed three or fours beers. I wasn't feeling antthing! Next thing I remember was waking up in the recovery room!
There was a nurse attending me and I asked her where I was and what was going on? She said I just came out of surgery and the doctor would be in shortly to talk with me.
Now for the bad news!
Dr. Debo arrived about 20 minutes later and explained that while doing the surgery, it turned out that it was not a brachial cleft cyst, rather an infected lymph node gland. He noticed a small lump on my tonsil and did a biopsy of that and along with the lymph node gland, sent it all to pathology to have them tested.
Both came back as squamous cell carcinoma.
Dr. Debo said he would have the pathology report in a couple days and we would discuss options then.
David and Sarah met me in another room while I was recovering and both had been briefed by the doctor as to what was going on.
I was released that evening since there was no point keeping me through the night if I could recover just as well at home. They wheeled me out of the hospital in a wheel chair and David and I proceeded to the Naval Hospital to fill my prescriptions for pain meds. I was given some Percoset, some antibiotics and something in case I became nauseous. We then headed home and I spent the next couple days recuperating.
Percoset works for the pain, but I was getting an alergic reaction to it I think. It really made me itch. Used percoset for a day and a half then switched to regular 325mg tylenol.
A few days later, Dr. Debo sent me this email:
Dear Mr. Vigal,
My nurse informed me that you requested that I e-mail you a brief synopsis of what we found at the time of surgery. I sent the tumor we removed from your neck to the pathologist for frozen section evaluation. This gives us a preliminary result and is not as accurate as the permanent pathology (so the results could change) but the results of the frozen section were that you have a squamous cell carcinoma. This tumor is likely related to your previous tobacco use. The primary site is as yet undetermined, however, while you were asleep, I examined the back of your throat and did a directed biopsy of your left tonsil to try to identify the primary tumor. I mentioned that this is a serious but treatable tumor. We will talk further on thursday when hopefully we will have the permanent pathology back.
Richard F. Debo, M.D., F.A.C.S.
06 October 2006
Back to the ENT clinic for the results.
Turns out the biopsy came back Non malignant. This is good right???? Dr. Debo thinks what we are dealing with now is called a: Branchial Cleft Cyst.
The plan is to perform surgery and remove the thing. Surgery is set up at Virginia Beach General Hospital.
Dr. Debo explains that he will make an incision in my neck, Left side and remove the cyst. I will check into the hospital on the 16th of October at 2pm and will be able to go home the following afternoon if all goes well. They are calling this a 23 hour short stay.
Turns out the biopsy came back Non malignant. This is good right???? Dr. Debo thinks what we are dealing with now is called a: Branchial Cleft Cyst.
The plan is to perform surgery and remove the thing. Surgery is set up at Virginia Beach General Hospital.
Dr. Debo explains that he will make an incision in my neck, Left side and remove the cyst. I will check into the hospital on the 16th of October at 2pm and will be able to go home the following afternoon if all goes well. They are calling this a 23 hour short stay.
04 October 2006 ENT Appointment
Arrived at Eastern Virginia Ear, Nose & Throat Specialists on time and met Dr. Richard Debo. We talked for a while and he informed me that he wanted to run a tube with a scope up my nose and down my esophagus to check for any tumors or anything unusual. First they sprayed some kind of numbing stuff down my throat so I wouldn't feel much, then he ran the scope up my nose and all the way down. I was watching with him on a monitor of my internal workings. Boy was that weird. Everything looked normal so he decided to do a biopsy of the lump on my neck. Biopsy
He took two biopsy's and said he would have the results in two days.
Here is a copy of the email he sent me following our appointment:
Here are the notes Dr. Debo sent me in an email:
Dear Dave,
As per your request I am writing to summarize our discussions from today's appointment. You presented to the office today for evaluation of a three month history of a left neck mass which has not responded to treatment with a first line antibiotic (Amoxicillin). You are a recently reformed smoker having formerly consumed one pack per day for the previous 20 years. The CT scan you brought with you revealed a well circumscribed mass in the left neck which touches the jugular vein, carotid artery and the parotid gland. The differential diagnosis at this point includes both benign and malignant possibilities. More commonly these things turn out to be benign tumors like branchial cleft cysts, enlarged lymph nodes, or infections. I am concerned however because of your past tobacco use about the possibility of a malignancy such as a squamous cell carcinoma, lymphoma or a thyroid neoplasm. After obtaining a through history and physical exam on you in the office we then performed a fine needle aspiration(FNA) of the neck mass to try to obtain cells for diagnostic studies. This may help to guide our further management. I placed you on another stronger antibiotic while we await the results of the FNA to see if we can shrink the mass down. I will see you back in the office in one week to review the biopsy results and to plan our next steps. I hope this helps you out. If you have other more specific questions please feel free to call me in the office I'll try to get right back to you.
R. F. Debo, M.D.,F.A.C.S.
He took two biopsy's and said he would have the results in two days.
Here is a copy of the email he sent me following our appointment:
Here are the notes Dr. Debo sent me in an email:
Dear Dave,
As per your request I am writing to summarize our discussions from today's appointment. You presented to the office today for evaluation of a three month history of a left neck mass which has not responded to treatment with a first line antibiotic (Amoxicillin). You are a recently reformed smoker having formerly consumed one pack per day for the previous 20 years. The CT scan you brought with you revealed a well circumscribed mass in the left neck which touches the jugular vein, carotid artery and the parotid gland. The differential diagnosis at this point includes both benign and malignant possibilities. More commonly these things turn out to be benign tumors like branchial cleft cysts, enlarged lymph nodes, or infections. I am concerned however because of your past tobacco use about the possibility of a malignancy such as a squamous cell carcinoma, lymphoma or a thyroid neoplasm. After obtaining a through history and physical exam on you in the office we then performed a fine needle aspiration(FNA) of the neck mass to try to obtain cells for diagnostic studies. This may help to guide our further management. I placed you on another stronger antibiotic while we await the results of the FNA to see if we can shrink the mass down. I will see you back in the office in one week to review the biopsy results and to plan our next steps. I hope this helps you out. If you have other more specific questions please feel free to call me in the office I'll try to get right back to you.
R. F. Debo, M.D.,F.A.C.S.
CT Scan
Boy was this ever weird! I arrived for the appointment and was escorted to a trailer where the CT Scan machine was located. The nurse had me take off my wedding ring and necklace and lay down on the CT Scan machine. This looks like a big table with a circular device that can travel the length of the table and has the ability to take pictures of your body. Here is a link that might be helpful:CT Scan
After I was laying down on the table the nurse hooked up an IV tube to me and informed me that he was going to inject some kind of dye into me that would basically light up my veins so they could see what was going on.
The dye they inject instantly makes your whole body warm. You can feel that stuff immediately. It also causes an urge to pee for some reason. After the dye was injected, the CT Scan machine began moving back and forth from the top of my head to my shoulders. This went on for about 20 minutes and then was finished.
I was advised that the as soon as the results were in that I would be notified.
After I was laying down on the table the nurse hooked up an IV tube to me and informed me that he was going to inject some kind of dye into me that would basically light up my veins so they could see what was going on.
The dye they inject instantly makes your whole body warm. You can feel that stuff immediately. It also causes an urge to pee for some reason. After the dye was injected, the CT Scan machine began moving back and forth from the top of my head to my shoulders. This went on for about 20 minutes and then was finished.
I was advised that the as soon as the results were in that I would be notified.
Summer 2006
My son and I left Port Orchard, Washington and arrived in Chesapeake, VA on the 2nd of July. We spent the next couple months unpacking boxes, putting the house together, figuring out the area, getting my son enrolled in school (Senior Year), getting a new vet for the dog, finding doctors for us and all the things one has to do when they move to a new area.
I made an appointment to see a Family doctor in August 2006 and had my first appointment on September 15, 2006.
During the exam, I pointed out the the lump on my neck. The doctor, (Dr. Kim-Foley) became very worried and said that we needed to get this checked out immediately. She scheduled an appointment for me to have bloodwork done, a chest xray performed and a CT scan done.
I was immediately sent over for the chest xray, but had to wait another day for the bloodwork due to the requirement to fast for at least a day. You are not supposed to eat or drink anything before blood tests, so I scheduled an appointment for the next morning.
The CT scan was scheduled for a few days later.
Chest xray and bloodwork came back fine with no problems.
I made an appointment to see a Family doctor in August 2006 and had my first appointment on September 15, 2006.
During the exam, I pointed out the the lump on my neck. The doctor, (Dr. Kim-Foley) became very worried and said that we needed to get this checked out immediately. She scheduled an appointment for me to have bloodwork done, a chest xray performed and a CT scan done.
I was immediately sent over for the chest xray, but had to wait another day for the bloodwork due to the requirement to fast for at least a day. You are not supposed to eat or drink anything before blood tests, so I scheduled an appointment for the next morning.
The CT scan was scheduled for a few days later.
Chest xray and bloodwork came back fine with no problems.
Spring 2006
I had developed athletes foot or at least what I thought was athletes foot. Don't even know if this has anything to do with anything, but figure I'll put this in here since it's what caused me to initially go to the doctor. Anyway, I went to see a doctor at the Naval Hospital in Bremerton, Washington because I had a crack in between my little toe and the next toe and couldn't get it to clear up. I tried sprays and creams to no avail. While I was trying to get this fixed, I also started a sweating problem. For some reason, I would begin sweating under may arms and my antiperspirant/deodorant would not work. I again, tried everything...every brand know to man with no luck. I went to the doctor and got unsatisfactory results.
I had also noticed a small lump about the size of a big marble on the left side of my neck. I thought it might me a swollen lymph node gland caused by infection from my toe or something. I asked the doctor about that and she shrugged it off saying it was nothing.
Long story short. I found something on the Internet about the sweating that cured my problem in 2 weeks. It's been 7 months and haven't had an issue.
The crack in btwn my toe finally cleared up on it's own????
The lump on my neck stayed!!!
My wife and I were in the process of moving from Washington state to Virginia due to her orders to a ship homeported in Norfolk, Virgina. She moved to Virginia in May and begain workups on the ship who was getting ready to deploy to the Persian Gulf in June. My wife found a house for us in Chesapeake, Virgina and My son and I had the responsibility of selling our house in Washington and getting ready to move our household goods.
My son and I arrived in Virginia and began settling in the new house on the 2nd of July, 2006.
The lump on my neck is still there, but does not hurt or even bother me. In fact, I only realize it's there when I shave.
I had also noticed a small lump about the size of a big marble on the left side of my neck. I thought it might me a swollen lymph node gland caused by infection from my toe or something. I asked the doctor about that and she shrugged it off saying it was nothing.
Long story short. I found something on the Internet about the sweating that cured my problem in 2 weeks. It's been 7 months and haven't had an issue.
The crack in btwn my toe finally cleared up on it's own????
The lump on my neck stayed!!!
My wife and I were in the process of moving from Washington state to Virginia due to her orders to a ship homeported in Norfolk, Virgina. She moved to Virginia in May and begain workups on the ship who was getting ready to deploy to the Persian Gulf in June. My wife found a house for us in Chesapeake, Virgina and My son and I had the responsibility of selling our house in Washington and getting ready to move our household goods.
My son and I arrived in Virginia and began settling in the new house on the 2nd of July, 2006.
The lump on my neck is still there, but does not hurt or even bother me. In fact, I only realize it's there when I shave.
Background
Name: David Vigal
Age: 44
Married to Marjie, have 1 daughter (Jennifer), 1 Son-in-law (Eddie), 1 Son (David), 1 Granddaughter (Alexis) and 1 Grandson (Daniel).
Occupation: Computer Customer Service Support; Retired in 2003 as a Senior Chief Information Systems Technician in the United States Navy.
Recently moved to Chesapeake, Virgina. My wife is the Operations Officer on a ship homported in Norfolk, Virginia. We had both been stationed and working in Port Orchard, Washington for the past 10 years.
Age: 44
Married to Marjie, have 1 daughter (Jennifer), 1 Son-in-law (Eddie), 1 Son (David), 1 Granddaughter (Alexis) and 1 Grandson (Daniel).
Occupation: Computer Customer Service Support; Retired in 2003 as a Senior Chief Information Systems Technician in the United States Navy.
Recently moved to Chesapeake, Virgina. My wife is the Operations Officer on a ship homported in Norfolk, Virginia. We had both been stationed and working in Port Orchard, Washington for the past 10 years.
Welcome to my blog
Soon after I was diagnosed with Tonsil Cancer, my Mom found a webpage from a guy named Raph who lives in the UK who was also diagnosed with Tonsil Cancer. His webpage gave me the idea to start this blog as a way of putting down my thoughts on a daily basis, storing pertinent information from doctors and keeping family/friends updated.
Please bear with me through this process as this is my first blog and I'm kind of blindly setting this up and getting the info posted.
This page will be updated whenever I have new information which hopefully will be on a regular basis. I have a lot of catching up to do, so this will be very basic and over the next couple months it will become more detailed with further links and photos. Again, I got this idea from a cancer patient named Raph who lives in Suffolk, UK. He is married with three sons and was diagnosed with Tonsil Cancer in 2003. His last post was in September of 2006 and he reports that everything is great so far, and for the last 6 months he has been clear.
Please bear with me through this process as this is my first blog and I'm kind of blindly setting this up and getting the info posted.
This page will be updated whenever I have new information which hopefully will be on a regular basis. I have a lot of catching up to do, so this will be very basic and over the next couple months it will become more detailed with further links and photos. Again, I got this idea from a cancer patient named Raph who lives in Suffolk, UK. He is married with three sons and was diagnosed with Tonsil Cancer in 2003. His last post was in September of 2006 and he reports that everything is great so far, and for the last 6 months he has been clear.
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