CancerCompass message board discussion started by rose01 on 5/2/2008 http://www.cancercompass.com/message-board/message/all,23665,0.htm Mon, 01 Dec 2008 00:00:00 GMT Mon, 01 Dec 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ My husband (54 y.o.) was diagnosed with stage iv squamous cell head & neck cancer w/mets to liver and bone this past January.  Previously, he had been an 8-year survivor of the same cancer (no mets in '99 though)!  We've now gone through 4 cycles of chemo (taxol, carboplatin & erbitux). The cancer tumors in the head area were reduced by 50%, cancer in bone was somewhat reduced but cancer cells in liver remained unchanged (might even have gotten a little worse).  Chemo drugs were changed to cisplatin, taxitere & still the ever-dependable erbitux.  The first weeks weren't too awful.  But the last few weeks have seen apperances of nausea, vomiting, and difficulty swallowing but the worst is the complete loss of appetite.  If this keeps up, he will need a feeding tube shortly.  Anyone been where we are going who could give some advice or tell me candidly what to expect.  We just got married in '06 so this has been a complete devastation but yet we are trying to stay focused and positive.   rose01 Fri, 02 May 2008 00:00:00 GMT Greetings,I am with you in spirit. Male diagnosed with stage 4 SCC of the tongue and right lymph node in December. Had Fu5, Taxotere and Cysplatin for 3 treatments (taken off 5FU as it mimicked a heart attack) and Carboplatin for the last 4 treatments through chest port. Just finished 6 weeks of radiation and have to go for 14 more "Booster" treatments of reduced radation/reduced field treatments. Underwent surgery for right radial neck dissection which removed the lymph nodes which had contained the cancer. The PEG tube I got in December has been a lifesaver as there were many weeks I was too weak and too sick to go near food. I was always thin, never weighing more than 154 pounds at 5' 10", so weight loss is a big factor for your husband. I applaud you for using these forums for information- they are tremendous sources of information. It has been a hard five months but it went incredibly fast. Here is a short list of  what to expect.- The aforementioned weight loss must be taken into consideration- make sure your husband gets his daily intake of calories each day. A nutitionist can help with determining his correct amount based on body weight and height/age.- Chemo may cause the "Chemofog" or "Chemobrain" condition in which short term memory and cognitive function may be dulled. Make sure there is a good Home Team of family, friends and the Medical team to offset these and other conditions.- Make sure you budget enough money to carry you over the rough spots if your husband has reduced or negated income. You also have to think about insurance, transportation to and from treatments, co-pays, parking and the boatload of prescriptions that often accompany getting well.- None of these are overwhelming if you plan for them and you seem to be on top of things! Gather up a list of resources from national and local cancer and wellness providers to assist with things like transportation, pharmacy deliveries, gas cards and home nurse visits. Always have a plan B for getting to and from treatments in rush hour traffic.You can read more of my journey at my blog at: http://www.psiplex.com which deals with staying creative in complexity. I encourage your husband to concentrate on a pass time or hobby he enjoys to have an outlet for the hours away from treatment. Have him keep a hand in his work if possible to remain connected to something familiar, so long as it is not stressful.Stay positive! There are so many more advances now than there were in the past and it all works toward our good. Your husband will make it through fine, just prepare and get ready for the fight- you and your husband can do it!One Love  psiplex Sat, 03 May 2008 00:00:00 GMT  On 5/3/2008 psiplex wrote:Greetings,I am with you in spirit. Male diagnosed with stage 4 SCC of the tongue and right lymph node in December. Had Fu5, Taxotere and Cysplatin for 3 treatments (taken off 5FU as it mimicked a heart attack) and Carboplatin for the last 4 treatments through chest port. Just finished 6 weeks of radiation and have to go for 14 more "Booster" treatments of reduced radation/reduced field treatments. Underwent surgery for right radial neck dissection which removed the lymph nodes which had contained the cancer. The PEG tube I got in December has been a lifesaver as there were many weeks I was too weak and too sick to go near food. I was always thin, never weighing more than 154 pounds at 5' 10", so weight loss is a big factor for your husband. I applaud you for using these forums for information- they are tremendous sources of information. It has been a hard five months but it went incredibly fast. Here is a short list of  what to expect.- The aforementioned weight loss must be taken into consideration- make sure your husband gets his daily intake of calories each day. A nutitionist can help with determining his correct amount based on body weight and height/age.- Chemo may cause the "Chemofog" or "Chemobrain" condition in which short term memory and cognitive function may be dulled. Make sure there is a good Home Team of family, friends and the Medical team to offset these and other conditions.- Make sure you budget enough money to carry you over the rough spots if your husband has reduced or negated income. You also have to think about insurance, transportation to and from treatments, co-pays, parking and the boatload of prescriptions that often accompany getting well.- None of these are overwhelming if you plan for them and you seem to be on top of things! Gather up a list of resources from national and local cancer and wellness providers to assist with things like transportation, pharmacy deliveries, gas cards and home nurse visits. Always have a plan B for getting to and from treatments in rush hour traffic.You can read more of my journey at my blog at: http://www.psiplex.com which deals with staying creative in complexity. I encourage your husband to concentrate on a pass time or hobby he enjoys to have an outlet for the hours away from treatment. Have him keep a hand in his work if possible to remain connected to something familiar, so long as it is not stressful.Stay positive! There are so many more advances now than there were in the past and it all works toward our good. Your husband will make it through fine, just prepare and get ready for the fight- you and your husband can do it!One Love Thank you psiplex for your kind words of support.  After my last post on Friday, the weekend was a tiny bit better.  He was able to eat a few bites of solids (if you can call crackers, cereal and oatmeal solids), some jello and the instant breakfast milkshakes.  It seems so very little.   He will be better tomorrow than today but Wed. brings another chemo treatment and we begin again.  He is so very weak and tired. I am concerned that this will be too much for him.  Again, any and all advice is greatly appreciated.  rose01 Mon, 05 May 2008 00:00:00 GMT Completely understand. I remember back in January, my sister sent me a 'care package' that was really sweet. She sent along a jar of plain vaseline for applying to lips - plain vaseline has no perfumes or scents that affect a person undergoing chemo and radiation. It helps to use it when starting chemo and radiation as they tend to pull moisture from the body. The care package also contained boxes of instant mashed potatoes, baby food, pudding, baby cereal and Flintstones childrens vitamins. While this may seem odd at first, it really helped to keep nutrition up as I became more and more tired and unable to eat regular food.I also receive a pack of women's low cut cotton socks. Again, odd, until you realize that regular men's pull-up tube socks or dress socks hurt your legs once chemo starts. My legs were swollen and if I used regular men's socks, it looked like dough was hanging over the tops of my socks. The low-cut cotton socks helped me to be free of this condition and allowed blood to circulate better.  She also sent me about 6 pair of doctor scrubs, both tops and bottoms. Perfect! The V-neck scrubs were great to wear during my chemo days to allow the Med Techs access to my chest port for the chemotherapy infusions. Great to for exams and radiation as you don't have to change out of your shirt for blood work, blood pressure and review of the affected sites by your doctor. The bottoms are nice and comfortable and have a draw string front to adjust for weight fluctuations. I recommend them for going through treatment. If you know of someone working at a hospital, they may be able to snag a few pairs.With chemo and radiation, be sure not to have strong food or cooking odors in the house with your husband. The treatment dulls your taste buds, but makes your olfactory system almost hypersensitive to food and cooking smells. Anything fried made me nauseous and cooking meat made me green. Additionally, make sure there are no trash odors from the kitchen trash can or garbage disposal, I was really sensitive to this for a short time. Ask your husband if anything smells funny to him and move it away from him. It can really help to make him more comfortable. The good news is, normal taste will return after the treatments abate. I am told that after radiation ends, the sore throat and dry throat lessen overtime.Don't give up the fight for one minute! You both are going to be fine, just forge ahead one hour and one day at a time and fight!One Love  psiplex Mon, 05 May 2008 00:00:00 GMT  On 5/5/2008 psiplex wrote:Completely understand. I remember back in January, my sister sent me a 'care package' that was really sweet. She sent along a jar of plain vaseline for applying to lips - plain vaseline has no perfumes or scents that affect a person undergoing chemo and radiation. It helps to use it when starting chemo and radiation as they tend to pull moisture from the body. The care package also contained boxes of instant mashed potatoes, baby food, pudding, baby cereal and Flintstones childrens vitamins. While this may seem odd at first, it really helped to keep nutrition up as I became more and more tired and unable to eat regular food.I also receive a pack of women's low cut cotton socks. Again, odd, until you realize that regular men's pull-up tube socks or dress socks hurt your legs once chemo starts. My legs were swollen and if I used regular men's socks, it looked like dough was hanging over the tops of my socks. The low-cut cotton socks helped me to be free of this condition and allowed blood to circulate better.  She also sent me about 6 pair of doctor scrubs, both tops and bottoms. Perfect! The V-neck scrubs were great to wear during my chemo days to allow the Med Techs access to my chest port for the chemotherapy infusions. Great to for exams and radiation as you don't have to change out of your shirt for blood work, blood pressure and review of the affected sites by your doctor. The bottoms are nice and comfortable and have a draw string front to adjust for weight fluctuations. I recommend them for going through treatment. If you know of someone working at a hospital, they may be able to snag a few pairs.With chemo and radiation, be sure not to have strong food or cooking odors in the house with your husband. The treatment dulls your taste buds, but makes your olfactory system almost hypersensitive to food and cooking smells. Anything fried made me nauseous and cooking meat made me green. Additionally, make sure there are no trash odors from the kitchen trash can or garbage disposal, I was really sensitive to this for a short time. Ask your husband if anything smells funny to him and move it away from him. It can really help to make him more comfortable. The good news is, normal taste will return after the treatments abate. I am told that after radiation ends, the sore throat and dry throat lessen overtime.Don't give up the fight for one minute! You both are going to be fine, just forge ahead one hour and one day at a time and fight!One Love You are right about the smells.  This just started a couple of days ago.  Yesterday morning, the next door neighbor burned some debris and the smoke caused my husband to become sick and lose all the food we had managed to get in him that day.  He is not on radiation this time around - just the chemo.  In 1999 he was first diagnosed with H&N cancer.  He underwent surgery and radiation at that time.  Was cancer free for nearly 8 years.  He has told me about the effects of the radiation. Some he was prepared for and some not.  For example, he wasn't prepared for the permanent dental damage.  But, that can be corrected easily enough. Thank you for your advice, support and suggestions.  The socks are a marvelous idea. His energy level is extremely low right now.  We go back for the 14th chemo tomorrow.  Thank you again.  rose01 Tue, 06 May 2008 00:00:00 GMT