CancerCompass message board discussion started by Debalou on 5/5/2008 http://www.cancercompass.com/message-board/message/all,23750,0.htm Thu, 21 Aug 2008 00:00:00 GMT Thu, 21 Aug 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ Hello all !I am sitting in a chair next to my husband as he goes thru his last chemo treatment.I have been trying to be strong through this journey that myhusband has been on but I am having very hard time.My husband was diagnosed with cancer the middle of November.We found out the primary was at the base of his tongue and went to his neck.He had 3 months of chemo prior to radiation. He just finished 32 day's of radiation this past tuesday and today his his last chemo. He had chemo just once a week during his radiation.It has been almost a week since his last radiation treatment. I thought we would see some improvement by now but he seems to be doing worst now. He has no energy at all. Sleeps all the time. Still has a hard time talking due to sore mouth and throat, rash and sores on feet from erbitux. He has been on a g tube since his 2nd week of radiation and he has a hard time getting enough nutrients.I have to work so I am not at home during the day to insure that he is eating as he should be and I'm afraid that he is so tired of all this and just doesn't try and he has mucus so bad.6 months ago My husband was so energetic. He worked out with martial arts 3/4 times a week, rode with a motorcycle club, taught 2 bible study classes a week and also worked with helping others in AA.Just frustrated and wanting this over. Thanks for letting me vent. It so hard to be strong. Deb Debalou Mon, 05 May 2008 00:00:00 GMT  On 5/5/2008 Debalou wrote:Hello all !I am sitting in a chair next to my husband as he goes thru his last chemo treatment.I have been trying to be strong through this journey that myhusband has been on but I am having very hard time.My husband was diagnosed with cancer the middle of November.We found out the primary was at the base of his tongue and went to his neck.He had 3 months of chemo prior to radiation. He just finished 32 day's of radiation this past tuesday and today his his last chemo. He had chemo just once a week during his radiation.It has been almost a week since his last radiation treatment. I thought we would see some improvement by now but he seems to be doing worst now. He has no energy at all. Sleeps all the time. Still has a hard time talking due to sore mouth and throat, rash and sores on feet from erbitux. He has been on a g tube since his 2nd week of radiation and he has a hard time getting enough nutrients.I have to work so I am not at home during the day to insure that he is eating as he should be and I'm afraid that he is so tired of all this and just doesn't try and he has mucus so bad.6 months ago My husband was so energetic. He worked out with martial arts 3/4 times a week, rode with a motorcycle club, taught 2 bible study classes a week and also worked with helping others in AA.Just frustrated and wanting this over. Thanks for letting me vent. It so hard to be strong. Debdear girl, this is a journey for both of you, one day at a time one foot in front  of the other, it does get bad sometimes before it gets better, but it is worth it...i am in remission, but life is different since i have been on this journey.we all want it over with ,but there too he will always have to be watched for his whole life. i had a naturopath she helped me to be strong while i was getting treatment,this medication takes so much out we need to put it all back to be strong to endure treatment. god blessmy jusykitty Mon, 05 May 2008 00:00:00 GMT Deb, as you mentioned, he seems to be getting worse. This will happen after the last treatment. The treatments are acummulative. It takes roughly 2-3 weeks after the finally treatment, before things start healing up ( sores in the mouth, etc ). Slowly healing afterwards.Hang in there, there is light at the end of the tunnel and you are almost at the end. There will be side effects even after he is feeling better. Stiffness of the neck from Radiation, Dry mouth and a few other side effects. But, he will be able to handle them and control allot of it. It has change my life, but keep going and do almost all that I did before. Each day, he will start to feel alittle better. Take Care Pop-Pop Mon, 05 May 2008 00:00:00 GMT Hi Deb,You're almost there, that's the good news! Now for the bad...for a couple of weeks after rad treatment your body still cooks. It's like frying something on the stove, when you remove it from the burner it continues to cook for a while. The next couple of weeks is when the effects of radiation get worse for most patients. The mucus increases and it can get pretty painful. Then one day you wake up and things just start getting better, and they keep getting better. That's the part to focus on and you will both be there soon. for me it took 3 weeks then I just woke up feeling a little bit better one day. That improvement has continued even 2+ years out and I have never felt better in my life. You've both learned how to suffer through this. Give it just a few more short weeks then things will improve fairly quickly. It's pretty amazing how the human body bounces back. Hang in there and focus on that light at the end of the tunnel. I guarantee it's not a train heading in your direction. It's your new life and it'll be great!!!Good Luck,Joe  Defjoeb Mon, 05 May 2008 00:00:00 GMT Hi Deb, I feel the same as you. My husband finished his last rad on Friday. This weekend has been the worst that he's felt. His throat always hurt but it seems now that the sores on his tongue are really bothering him. I know from reading posts on this site that it is normal to feel this way. His doctor also told him that the month of May will be a rough one for him. I guess she's right. They are trying to get his last chemo in tomorrow if his counts are up. On one hand I want them to give it to him but on the other hand I know he's going to feel worst. I try to tell myself that a month from now he'll be feeling better (although he'll be having surgery) Let's try to hang in there together. Carol Carol capp519 Mon, 05 May 2008 00:00:00 GMT Deb,Right there with you! Still have 11 days to go with radiation , but chemo is done. Chemo has a 'half life' and it will take a few weeks to begin to leave the body. I was told 10 days to 2 weeks by my advocate who is 3.5 years past his head and neck cancer.The effects of radiation are pretty raw. Just make sure your husband gets a LOT of rest. Keep up with the redness with an aloe-based lotion with no fragrance and keep getting him to swallow water or gargle with baking soda and salt water to ease the throat pain and keep the swallowing muscles active. That has been my crux, but it's almost over.After radiation is over and I get stronger, I plan to walk everyday eventually building up to 30 minutes per day. Getting the heart and cardio back up will get your husband's energy back and help to eliminate the nasty chemicals from his system.All the best!   psiplex Mon, 05 May 2008 00:00:00 GMT Deb, I read your post and I felt like I was reading my own feelings right there in front of me.  This weekend I cried just about all day Sunday seeing what this is doing to my once unstoppable husband.  He was so active and had triple the energy I did.  Today he felt so bad he cried on my shoulder which he never would have dreamed of doing before this.I feel your pain and we still have 3 weeks to go.  How can it get any worse?!?!?!?!?  I am definately in pity party mode right now and I just want to say that I feel you too.  Hang in there *hugs*Cancer SUCKS!!!!!!-Brandi g8orgal79 Mon, 05 May 2008 00:00:00 GMT It will take a couple more weeks before you turn the corner. I was more fatigued after treatment than during treatment. It turned out that I was anemic from the chemo--so make sure blood counts are okay. Taking an iron supplement made a huge difference. Make sure he stays hydrated--at least 64 oz of fluid everyday. Dehydration causes fatigue, and also caused me to be in more pain. Girlcat36 Mon, 05 May 2008 00:00:00 GMT To All of you who are currently going thru or just finished this treatment, I wanted to tell our story and hopefully offer some words of encouragement and hope. My husband was diagnosed with Tonsil Cancer 6 years ago. It was stage 4 and we were both scared to death although I couldn't admit it because I felt that I had to be the strong one to help him thru. We underwent 24hr/5 day a week chemo treatments every 3 weeks, and 5X a week radiation treatments. This lasted for 3 1/2 months. He lost his voice after the first week of radiation, so I had to stay with him full time because if he needed anything, he couldn't call me or anyone to help. They inserted a stomach tube before beginning treatment, and that was a lifesaver. He was unable to eat after the first couple of weeks of radiation, so everything including his meds went in his tube. I encourage anyone who is just starting this process to ask your doctor about having one inserted. It makes it so much easier to make sure that the patient is getting enough badly needed nutrients. He was on a special high calorie liquid formula and we still had trouble getting enough calories into him so that he had enough energy to walk to and from the car for treatments. At one point, I purchased bodybuilder protein supplement from GNC and added it to his formula to boost his calorie intake. He still ended up losing about 60lbs. Some was needed, most wasn't. His treatment began in February of 2002 and ended in the middle of June. It took him several weeks for the affects of the radiation and chemo to start wearing off, but within a month we was able to walk for approximately 1 mile and had enough energy to do little things around the house again. His feeding tube stayed in for another 6 - 8 weeks after his final treatment because it took awhile for his throat to heal. It actually came out earlier than the doctors wanted because it got caught on something and was pulled out. My husband didn't want to go thru the process of having another inserted, so he forced himself to drink protein shakes until he was able to tolerate solid food. I honestly don't recall how long that took, but I would say it was probably another few weeks. For those with severe mouth sores, I would ask your doctor about Hurricane. It is a topical anesthetic that is very strong but effective if diluted and sprayed in the mouth. Now for the encouraging part, he has been cancer free for almost 6 years. He originally lost all taste and saliva, but that is back almost 100%. I saw in another message board that Dr's are telling patients that you shouldn't lose hope until it has been 18 months without improvements. I say you should never lose hope. It has taken almost 6 years for it to come back, but it has for him so it can for you too. He still has problems with mucous buildup in his throat, but when he drinks plenty of water, that usually isn't much of a problem. Really, the only remaining side affects that he has from this ordeal, is some slight discomfort from the g-tube scar, and occasional cramping of his neck muscles. So for all of you out there, keep your spirits up and you will see the light at the end of the tunnel. For you spouses and supporters out there, you must stay strong and you WILL have to be a drill sergeant. They will want to give up but you can't let them. You will feel horrible doing it, but you have to make sure that your loved one does everything that they need to do to come out of this in the best possible shape. SpecialK Mon, 05 May 2008 00:00:00 GMT Hi, Deb. Everyone else is pretty spot on. It takes about 3 weeks after the end of treatment to start improving. It was 3 weeks for me before I started feeling remotely human again. I'm sorry to say those will probably be the most miserable 3 weeks of his life, they were of mine.Keep him comfortable and hydrated (my biggest problem) and just be there for him. In just a few more days, life will start to get better, and before you know it you'll have him back again.I was just the way he is now, I slept all the time, didnt feel like eating ( even through my tube), and felt too crappy to care, but here I am, a little over 6 months out and I feel great. It's a tough road, but you both will get through it. Best wishes, Mike micromisterphone Mon, 05 May 2008 00:00:00 GMT Dear Deb and all the wonderful people on this board, there is comfort in knowing that all of our paths are similar.  we are two weeks out of my s.o.'s treatment and are just waiting for that day he will feel better.  last week we both had an emotional breakdown...it was his first since being diagnosed last fall...(i have lost count of how many i have had!)  it was good for both of us...the next day we seemed to have regained some stamina.most encouraging is reading the posts from survivors...it has given us so much hope for a new and even better lifethank you all...and hang in there Deb...it isn't easy but you can do!~meesh meesh Tue, 06 May 2008 00:00:00 GMT  On 5/5/2008 SpecialK wrote:To All of you who are currently going thru or just finished this treatment, I wanted to tell our story and hopefully offer some words of encouragement and hope. My husband was diagnosed with Tonsil Cancer 6 years ago. It was stage 4 and we were both scared to death although I couldn't admit it because I felt that I had to be the strong one to help him thru. We underwent 24hr/5 day a week chemo treatments every 3 weeks, and 5X a week radiation treatments. This lasted for 3 1/2 months. He lost his voice after the first week of radiation, so I had to stay with him full time because if he needed anything, he couldn't call me or anyone to help. They inserted a stomach tube before beginning treatment, and that was a lifesaver. He was unable to eat after the first couple of weeks of radiation, so everything including his meds went in his tube. I encourage anyone who is just starting this process to ask your doctor about having one inserted. It makes it so much easier to make sure that the patient is getting enough badly needed nutrients. He was on a special high calorie liquid formula and we still had trouble getting enough calories into him so that he had enough energy to walk to and from the car for treatments. At one point, I purchased bodybuilder protein supplement from GNC and added it to his formula to boost his calorie intake. He still ended up losing about 60lbs. Some was needed, most wasn't. His treatment began in February of 2002 and ended in the middle of June. It took him several weeks for the affects of the radiation and chemo to start wearing off, but within a month we was able to walk for approximately 1 mile and had enough energy to do little things around the house again. His feeding tube stayed in for another 6 - 8 weeks after his final treatment because it took awhile for his throat to heal. It actually came out earlier than the doctors wanted because it got caught on something and was pulled out. My husband didn't want to go thru the process of having another inserted, so he forced himself to drink protein shakes until he was able to tolerate solid food. I honestly don't recall how long that took, but I would say it was probably another few weeks. For those with severe mouth sores, I would ask your doctor about Hurricane. It is a topical anesthetic that is very strong but effective if diluted and sprayed in the mouth. Now for the encouraging part, he has been cancer free for almost 6 years. He originally lost all taste and saliva, but that is back almost 100%. I saw in another message board that Dr's are telling patients that you shouldn't lose hope until it has been 18 months without improvements. I say you should never lose hope. It has taken almost 6 years for it to come back, but it has for him so it can for you too. He still has problems with mucous buildup in his throat, but when he drinks plenty of water, that usually isn't much of a problem. Really, the only remaining side affects that he has from this ordeal, is some slight discomfort from the g-tube scar, and occasional cramping of his neck muscles. So for all of you out there, keep your spirits up and you will see the light at the end of the tunnel. For you spouses and supporters out there, you must stay strong and you WILL have to be a drill sergeant. They will want to give up but you can't let them. You will feel horrible doing it, but you have to make sure that your loved one does everything that they need to do to come out of this in the best possible shape.  Hi SpecialK,I was so happy to see your response.  I also had tonsil cancer stage 4.  I was diagnosed July 31, 2006.  I went through 7 weeks of radiation treatments 5 days a week and chemo twice a week for 7 weeks.  I am almost two years out and still don't have my taste buds or saliva.  I was beginning to think that it was never coming back, but after reading your response about your husband's coming back after 6 years,  I realized I must not give up hope that it will return.  I have a strong faith in God and have put it in his hands.  Hopefully, one day I will be as fortunate as your husband and mine will return also.  The treatments were the most difficult thing I have ever been through in my entire life, but thank God I am still alive.  Sailin Lou Tue, 06 May 2008 00:00:00 GMT Hi Deb, Stay strong, it DOES get better!!  I was diagnosed with Stage 4 Tonsil Cancer in July of 2006.  I went through 7 weeks of radiation 5 days a week and 7 weeks of chemo twice a week.  It was the most horrific experience I have ever gone through, but it made me a stronger person and a better person.  Yes, the side effects are absolutely horrible.  I had a feeding tube in for almost 6 months, and it was my life saver.  I wasn't able to swallow or talk for those 6 months.  I would take little sips of water just so that I wouldn't lose my ability to swallow, but I have always described the excrutiating pain when I tried to swallow as trying to swallow chards of glass that were on fire!  I had third degree burns on my neck from the radiation and I had horrible thrush. The thrush was so bad I had to use an aspirator.  It was absolutely miserable.  I will tell you after months of dealing with the thrush, my primary care physician prescribed Diflucan because she believed it was caused by a yeast infection. We crushed one pill and put it in my feeding tube and within 5 days the thrush was gone!! So, if your husband is still dealing with the mucus ( thrush) ask his doctor to prescribe Diflucan.  I was amazed and angered by the fact that I suffered all those months with that horrible mucus and it could have been cleared up with just one pill.  My saliva and taste buds are not back yet, but I truly believe they will eventually and gradually come back.  Every person heals differently and some of us take longer than others, but things do get better slowly and gradually.  As far as my strength, I have almost all of my strength back.  I am eating everything by mouth.  Some things are harder than others to eat due to the lack of saliva, but it is doable with water. I feel great and I'm cancer free.  Your husband will get better, it just takes time.  Radiation and chemo take so much out of your body that it takes a long time to recuperate from the damage,BUT you do get better. So, stay strong; keep a strong faith in God, and take one day at a time.  There is light at the end of the tunnel now, so aim for the light:) Lou Sailin Lou Wed, 07 May 2008 00:00:00 GMT Good Evening Deb;As all the previous posters have implied, stay strong and focused and find comfort in knowing that the fatigue will fade and in return you will have that vibrant husband back. Right now his body needs the rest from the tx. but do make sure he is eating. His body needs the fuel to keep the recovery moving forward!Take care;Kevin K. C. Wed, 07 May 2008 00:00:00 GMT