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nasopharyngeal-just diagnosed

34414134
Posts: 6
Joined: Jul 2005

My husband has just been diagnosed with nasopharyngeal squamous cell cancer and has met with chemo dr. and goes Tues. to get feeding tube - then meet with radiation dr. I am totally frightened and if anyone can tell me anything that will help let me know. Am and have been praying and have a good prayer support group.

Thanks in advance for helping me out.
Margaret - mgates@aristotle.net

Christmas
Posts: 91
Joined: May 2005

I am a nasopharyngeal cancer survivor and I understand that there are lots of us around because this type of cancer has a very high survival rate. In October 2003, I began 33 sessions of radiation along with monthly chemo which ended in March. My doctors did not recommend a feeding tube. I received my treatment at Stanford Medical Center; met several other patients receiving same treatment. They were not given a feeding tube either. Is your husband terribly underweight?

34414134
Posts: 6
Joined: Jul 2005

My husband is not underweight at all - just the right weight for his height and in pretty good shape. No other health problems. We know he will have at least 43 radiation treatments and several rounds of chemo after the radiation is over. He will also have chemo 3 times during radiation on the same day. We were told this is to make the radiation work harder. I don't know what to think but everything I read seems to say the feeding tube is necessary. Maybe we won't need to use it. Thanks. Margaret

tracy_csn
Posts: 15
Joined: Jul 2005

I am 55 year old male, and in Sept 04 was diagnosed with nasopharyngeal squamous cell cancer. I had panendoscopy and neck surgery and they located the cancer in my tonsil. Then started radiation (39 treatments) with synergistic chemotherapy (cysplatin). A couple of doctors encouraged me to get both feeding tube and mediport (it lets them take blood and give chemo iv's more easily). I am really glad that I got the feeding tube, because my particular radiation temporarily eliminated all taste, which made it impossible for me to eat. My radiation oncologist recommended an on-line source for a great high calorie shake mix, because I had a real problem getting enough calories down the tube. I also started with Ensure, but that turned out for me to not be good, because it has a lot of oil in it. My shake mix was based primarily on milk, and that worked best for me. I now have both the tube and the mediport removed. My only remaining issues are dry mouth (radiation temporarily hits the salivary glands) and physical therapy, acupuncture, and massage for neck discomfort due to scar tissue and atrophied muscles after surgery. As other survivor mentioned, this is a cancer with significant survival, depending of course on lots of variables... I have no idea if any of this helps... For me, I also participate in a local (Columbus, OH area) head and neck cancer survivor's support group; that has been very helpful to me for support and information.

34414134
Posts: 6
Joined: Jul 2005

Your information does help - thank you. Especially the shake mix. The doctor has told us there is a 95% 5 year survival rate. We were told to get the feeding tube before the treatment starts and I have a feeling we may need it. Were you able or unable to function fairly normally during your treatment? This is difficult to word but we don't know exactly what to expect. Thanks - Margaret

tracy_csn
Posts: 15
Joined: Jul 2005

For each part of my treatment, there were significant side-effects, from which I recovered, or am still recovering. As a result of my neck surgery, I temporarily could not use my shoulder or raise my arm. As a result, I am continuing to do physical therapy, first to get full range of motion back, and now to rebuild my basic muscle strength. I experience a lot of discomfort from the tightness and scar tissue shrinkage, but it is manageable.
As a result of the radiation, I lost taste and most saliva. After about 10 days of radiation, I could no longer eat anything because it all tasted like wood chips or cardboard. With the feeding tube, at first I could not get enough calories in, taking mostly Ensure. After losing about 30+ pounds, I started an every-2-hr routine with shakes and consumed about 3400 calories per day, at which point I stopped losing weight. One side effect of the shake diet, as well as the Ensure, was that it is hard to regulate one's bowels with the wierd food. For me, Ensure led to diarrhea, but with the milk based shakes, that was no longer a problem. The shakes were Scandishakes, from http://www.axcan.com. I also found those at a local pharmacy, but I ordered them on-line by the case, since I did four or more 650 calorie shakes per day.
My chemo was not a primary chemo treatment, but what is called "synergistic", or doing enough chemo to soften the cancer up for the radiation to have more effect. In any case, the chemo was very difficult. I had about 8 hrs per day iv's five days a week, for two sessions a couple of weeks apart. Side effects were very bad nausea (treated with yet more drugs), but the hardest part was the "chemo-lobotomy", or what the nurses called "chemo head". Your consciousness is reduced considerably... I found that I could not get myself to surface enough to talk to my wife... and it got to where I couldn't even concentrate to watch tv or read. But that clears again, as soon as the drugs wear off, in about a week.
The other side effect was fatigue. I took naps a couple of times a day. It is important to not fight that, just lie down and rest when you have to.
I also had some depression, but that too passes.
Finally, my wife was with me day in and day out. She was incredible in supporting me. A strange side effect was to be confronted in such an immediate and vulnerable way what it means to have to ask for help, and then to get it...
Final, final, is that life is different, my perspective has and is continuing to change, and I am working through, in a positive way, trying to figure out what is important...

holland1013
Posts: 3
Joined: Jul 2005

Hi, these first few weeks are the most frtightening. You'll soon learn that survival rates are higher than ever and getting better every month. I am a 55 year old survivor. I was stage 3. The combination chemo/radiation is what they gave me at Sloane Kettering. It is extremely successful. I was diagnosed in October 2004. My treatments finsihed in February. I have had 100% clean scans since. High protein shakes through the tube are very important. Our apartment was like a warehouse for a while. We got the one we liked in cases. We mixed it with OTC calorie boosters.
All my love and prayers to you both. You will beat it!!!
Chris
PS Talk to your doctor before you decide on any antioxidant diets or supplements. We were told they are actually counter-productive to the oxidization process the radiation creates to elinimate the tumor(s).

34414134
Posts: 6
Joined: Jul 2005

Chris thank you for your positive input. It is very scarry and we are still waiting on an MRI due to what possibly could be some bone involvement at the base of the skull. The waiting is terrible. The radiation dr. says it is very unusual for this type of cancer to do that - thus the MRI. He said all the scans showed up clean but this one place and they are not sure what it is. Now we wait.

Thanks so much for your help and prayers. We are going to beat this.

Margaret

Sdawe
Posts: 14
Joined: Mar 2005

My husband is 7 weeks out of radiation and is having issues with no taste, little saliva, and is getting depressed because it has been a long road since surgery the first of March. I know this is all normal but any words of wisdom?

Christmas
Posts: 91
Joined: May 2005

Keep trying different foods and drinks. Taste and saliva will return. I went through periods where I only ate soft scrambled eggs, or instant cereal, or angel hair pasta, or French onion soup. Seven weeks out of radiation is not long. He's made it! There's still a lot of things that I can't eat, but I'm eating better every day. Weird, I can't eat steak, but ground beef in gravy works fine. I'm going through a period of frozen dinners for lunch - salisbury steak or BBQ riblet. Meats can be introduced later. Try eggs and soft cooked vegetables first.

oldejack's picture
oldejack
Posts: 28
Joined: Sep 2005

3 year survivor here...
soup, stroganoff, oatmeal, NO PEPPER SPICES!!
seriously they hurt especially at first.
chicken vegetable broth now thats a different story. start out lukewarm, the mouth is still really burned. think serious 2nd degree burns and you'll be close. oh yeah sherbert pushups like we had as kids, those are great. the kirkland(costco housebrand) diet shakes are based on buttermilk and i tolerated those really well. still keep some in the pantry as a matter of fact. he'll have to relearn how to taste but it make eating out an adventure. good luck.

devildawg
Posts: 16
Joined: Jun 2005

I know this doesnt help with the major concerns,but I suggest he eat all his favorite foods as much as possible,because for me after four weeks of radiation I was no longer able to eat and even today I am unable to eat the majority of food,my diet consists of cereals and soups and not much of anything else the radiation affected the muscles in my throat and I have trouble chewing and swallowing anything like breads and chips anything that is not soft,well have trouble swallowing everything,for me it was a long process I trouble talking for a few months and I went 10 months without eating a single thing,but I would always try to eat something even if it wouldnt go down,as frustrating as that was,I suggest talking with a speech pathologists for execises to keep the muscles in the neck active.Just stay positive and have faith in the doctors helping you.

AuthorUnknown
Posts: 1564
Joined: May 2006

I was diagnosed with this type of cancer last November. I went thru about 7 weeks of radiation, and don't recall how many chemo "episodes". So far I'm cancer free, and life is returning to normal except for one thing. I still have my peg tube. My esophogus was shut due to scar tissue and swelling. I've been thru 5 dialation surgeries and my esophogus is now back to normal. However, I still have trouble swallowing anything that is solid. Liquids, creams and puddings are fine. I'm now seeing a speech pathologist who is going to help me learn to swallow again. Does anyone know how long it takes to get back to normal swallowing if it returns to normal at all? Also, spicy foods. I loooove spicy foods. Anyone able to eat anything remotely spicy? And if so how long did it take?
I'm going on 9 months with a peg tube and I'm ready to say good-bye to it!
I realize each case is different, but I'm just looking to see how long it too everyone to get back to somewhat normal eating habits.
Thanks for any info! It is hard to find info on this particular type of cancer.

Christmas
Posts: 91
Joined: May 2005

I miss Mexican food! No jalapenos though. I found that I can tolerate white and black pepper. Certain mustards are OK. No red chili peppers yet. Keep trying. Someone made a salsa- will have to ask what spices are in it. That was OK. I finished chemo March 2004.

34414134
Posts: 6
Joined: Jul 2005

My husband completed 7 weeks of radiation today and has come through this fairly well according to his doctors but has more chemo to go. I will say that the feeding tube was the life saver and helped him keep his strength up while his taste and appetite are non-existent. I say this for all those newly diagnosed who may read the postings here. After a stay in the hospital for severe constipation we were sent home with the IV pole, Jevity, bags and pump and this has helped us so much. I wish someone had followed up with us after the feeding tube was inserted - it might have saved us a trip to the hospital but it has all worked out. He is anxious for his taste to return so he can enjoy eating again. He can now eat a little ice cream, soup, cream of wheat and drink milk. Of course that is when he is not nausuous. His throat and neck are healing now and he is exercizing a little bit and walks a little and we think positive thoughts and just try to take each day as it comes.

Mountain65
Posts: 4
Joined: Aug 2005

A 49 yr old one year survivor here... Stage IIb nasopharyngeal carcinoma... 7 weeks of radiation and concurrent and adjunctive chemo... All scans currently clear... had a PEG tube for 6 months...still lost 42 pounds...would not have survived without it. Required 2 esophogeal dialtions to be able to swallow solid food, though dry mouth is still a problem. All taste has returned except sweet (I really miss that). Have significant shoulder pain due to muscle atrophy...physical therapy and naprocin helps.
Your support will mean everything... without my wife I would have died...literally. Am now back to work (active duty military) full-time...and I carry a water bottle where ever I go... Its scary, I know, but together, you will make it... Your husband needs your strength now more than ever.... Good luck!!

34414134
Posts: 6
Joined: Jul 2005

Good to hear you are cancer free - it is very encouraging. My husband is improving every day but has to have the water bottle - very dry mouth. He wants to eat but nothing tastes right yet. He drinks buttermilk. His throat has pretty much healed okay. We walk in the mornings and he does his exercises in the afternoons. He has lost about 17 lbs. The next chemo is in two weeks and there will be two more after that. We don't know yet when they will do any tests to see how well the radiation has worked. About how long until most of your taste returned?

Best wishes to you too to stay cancer free.

AuthorUnknown
Posts: 1564
Joined: May 2006

It's been about 11 months for me now and my taste buds are "almost" back to normal. I noticed somewhere around 5-6 months they started to return. However I would think each case would be different depending on the amount of Radiation recieved. For me it feels like my taste buds have "reset" themselves and I have to learn to acquire the taste of certain thing again, like wine. Before, I loved the taste, but now it is like the very first time I tried it. Swallowing seems to be my biggest issue at the moment.

AuthorUnknown
Posts: 1564
Joined: May 2006

Also, I forgot to add regarding your husband's dry mouth. I've been using a product called Oral Balance made by BIOTENE. They have gums, gels and liquids. It really helps to moisturize your mouth. Especially at night when you go to bed. Before I would have to wake up and drink water every 3 hours. But now it is rare that I have to do that.
I prefer the liquid because it seems to taste a little better and it doesn't give you a "thick" feeling like the gel. It does burn my throat a bit but they may be due to the dialation surgeries I'm going thru.
Good luck!

JohnG
Posts: 12
Joined: Apr 2003

I am a 40 year old man who has been successfully treated for stage IV nasopharyngeal cancer in 2002-03 with induction chemotherapy followed by IMRT radiation (I was 37 then). I had many of the symptoms your husband is having and will have.

In 2 and 1/2 years, I have regained most of my energy, strength, range of motion, most of my taste and smell, most of my saliva (either it's mostly come back or I've gotten so used to the lack of saliva that I don't miss it so much -- I can't tell which). Even a whole year after treatment I wondered if things were ever going to get back like they were, but now 2 and 1/2 years later I feel 99% like I used to feel.

Good luck.

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