I have been following this web site for months, while my husband underwent treatment. During that time, I was too stressed and busy to register or post. I want to thank all who do post and answer questions. The info and support has been very helpful.

My husband is now 6 weeks post tx. He is improving but it is all still very difficult, especially the continuing mouth sores, swelling on one side, and thick mucus, alternating with dry mouth. Continues on PEG tube feedings (2 Cal). Recently increased oral diet from clear fluids to puree soups, etc.

Worrying about the enormity of permmanent change going forward, is starting to take it's toll on me, after remaining strong during tx. We have always been active - especially enjoyed extensive independent world travel. My husband was always healthy and strong. All his life he has exercised, ate well, and had a great optimistic nature. The gym work outs also provided a routine and social network in retirement. Needless to say, this was a tremendous shock, as I'm sure it is to all.

CT 10/20: clean, except for original affected lymph node (RO reports it is probable scar tissue). F/U PET scheduled 11/6

We are trying to adjust to the post tx period, after four months of concentrating on getting through side effects.
travelottie

As you well know, treatment affects us different ways and so does the time for healing. For me, it took a good 3 to 4 months from my last treatment to really feel a sense of normalcy. The body takes a while to rid itself of the radiation effects and all that mucus, dry mouth, and mouth sores are unfortunately very typical. Good luck and know that better days are ahead!

Welcome to the site, and there is lots of information available that you should find helpful.

My diagnosis was very similar to your husband's, as was my treatment, except it seems he did not have neck dissection as I did.

What I have found is that you can't spend time worrying about side effects or long term sequelae that may or may not occur. I had a fairly easy time through treatment, relatively speaking, in that I did not require a PEG tube, and did not have severe radiation burns. I have the current battles of dry mouth, shoulder and neck stiffness, etc. that are part of the whole package, but I play golf, travel a great deal, work every day and do pretty much what I did before treatment. My sense of taste is not as good, and my shoulder issues make certain tasks a little more difficult, but I do them. An extra Advil every now and then is a relatively small price to pay.

My wife and I travel extensively, and we went on our first trip just a few weeks after treatment ended. I've been on a few since, and enjoy them just as much as before.

What will tomorrow bring? Who knows? I just try to keep a smile on my face, deal with today, and face tomorrow when it gets here. ;-)

Thank you so much Jeff & William. It is good to hear that with some adjustments, there is hope. My husband is generally very resilient but this has brought him to his knees.
Removal of neck node is still being evaluated.

Jeff - How did you travel several weeks after finishing treatment? My husband was still gagging & vomitting almost daily from thick secreations.

This morning has been difficult for no particular reason. Perhaps more time to think now....
Lottie

I like, Jeff, had a fairly easy time in comparason with many, but I also had no chemo or PEG. My taste is close to 100% and was mostly back in 6 months although it took 4 years before I could handle anything acid like vinegar or red wine. We too travel to Europe and still do for 5 weeks every other year. Five months after rads, we took a 2 week vacation to St. Kitts to just relax. Rented a condo which allows you to not have to rely restaurant food with your iffy mouth although we did eat dinner out.

Since your husband went into to this with healthy habits, it shouldn't be too difficult for him to resume them. At 6 weeks he should be able to do some exercise even if only a walk around the block. Does he have a suction machine for the mucous, a humidifer in the bedroom, rinsing with baking soda and water, or taking robitussin or similar? Is he attempting to eat moist foods and drinking plenty of fluids? Even if he is on the PEG, he must continue to swallow. He should try taking a little by mouth if he can.

I would guess you guys will be doing world wide travel again. Why don't you try to find a relaxing place with good, not spicy food, and plan a trip to it for sometime in the spring. It would give you both something to look forward too and a time to recuperate from the ordeal your bodies and minds just went through.

Take care,
Eileen

Eileen, What an encouraging messsage from someone years out from treatment! I thank you.

My husband is walking outside and has been doing this on an almost daily basis, thru tx. Hopes to get back to treadmill at gym by 11/1.

Mucus has decreased enough that he doesn't want suction machine. (tried one while OP in hospital). He uses baking soda sol, gelclair, & biotene mouthwash. I will look into humidifier. RO said no to Robitussin, will check this out again.

Re eating: tolerating 4-6 oz pureed soups, yogurt, & pudding. Drinking water throughout day. Next week will try scrambled egg, etc. RO said should challenge himself each week to more difficult textures - if unable to eat soft/solid food by 8 wks post rad, will need to be checked.

I have thought about planning a trip to a location where we could be self-contained. I agree that spring might be the time frame to aim for. Glad to see that you also think that's reasonable.

Should I continue this on another forum? Lottie

You said your husband was into exercise and active before treatment, and that was the same with me. At six months post treatment I started jogging on my treadmill, which was around February. In Ohio that is snow and cold season, so exercised inside for February - April. I gradually worked my distance and speed up. It was a slow process. Throughout this past summer I have ran in probably 8 5K(3.1 mile) races with my time improving each race. I run 20 - 25 miles a week now. Under your doctors supervision, slowly work some of his old routines into his daily life.

At about 1 1/2 - 2 months post treatment I was eating by mouth cream soups, pudding, and the famous Carnation Instant Breakfast VHC drinks to learn how to swallow again and keep my calorie intake around 3,000 calories a day. I gradually added mashed potatoes and meats with loads of gravey and butter, pasta with a lot of sauce, while swallowing every bite with water. I used frozen dinners that had soft vegetables and foods with gravey. I had to relearn how to swallow.

Last week I had my third post treatment PET scan and finally got a clear report. My first two showed uptake which was found to be healing and scar tissue. So don't be surprised if the first few scans don't come back clear.

I received a lot of encouragement and knowledge from this forum, so keep checking back, reading, and ask a lot of questions.

Your husband definitely has the fact that he was active before all this on his side. It will help in the long run. I recovered quickly from everything like Jeff and Eileen but I'm also really young. I used my PEG tube for about 2 1/2 weeks or so after treatment and then one day I just gave it up and made myself eat by mouth and now there's nothing I can't eat except really spicy food. I finished treatments on July 31st and took a trip over Labor Day - nothing too active but it was great to get away. I noticed that my recovery sped up once I stopped sitting on the couch all day and I got out and did a little something every day (it's very convenient that I live near an outlet mall!) and also when I started eating real food - I got stronger much faster.

I still use a humidifier because my sinuses get dry at night. I also used Robitussin when I had the thick stuff going on. We joked that we were going to end up on some sort of government watch list for buying so much.

So, just give it time and things will get back to "normal." I'm dying to get back out and go hiking and camping again soon!

Welcome to OCF!

Your husband is recovering slowly or so it seems. To me he sounds like he is doing fine and is on track. When I was 6 wks pot tx, I still could barely eat. My diet was LaYogurt banana yogurt cuz it is so smooth. Milkeshakes can also become a dietary staple. He may still have the burning mouth and burnt taste for a while yet. A big thing right now is food's texture. The smoother the better, swallowing still is very difficult.

As far as energy goes, this area took me forever I felt to bounce back. I think I finally started feeling not quite so tired at about 4 months post tx. I still was very far from being back to normal at that point. My fatigue lasted thru my second round of OC until I started doing the hyperbaric oxygen treatments. So basically, for me I was fatigued thru 2 rounds of OC and it took me 11 months to regain my energy. At this point I feel like my energy is completely back as Im 16 months post tx.

Hoping your husband feels better soon. Have patience, its been a very long road but it does get better. Glad you registered, we are here for your support too

I am over 2 years out and everything other than me being 2 years older is just fine, in some ways better believe it or not. I started back bike riding appx 4 months post Tx and it was a challenge but thankfully along came tax season and I didn't get to resume until May which was 8 months post and boy did that extra time make a big difference. In no time I was riding with my old group and I have never looked back. One thing that I was surprised at was the fact that even though my dry mouth at that time was pretty bad (I pretty much couldn't stray far from my water bottle) I could exercise normally and only required fluids like pre Tx.

My taste came back it seemed in spurts. I remember a spurt after 4 months; again after 5 months; nothing noteworthy until 15 months and then again around 23 months. I would say it's almost normal as is my dry mouth as the 2 seemed to improve at the same time.

I didn't have any surgery nor the Peg.

I did test positive for HPV 16 and I suspect his slides would have also.

His recovery will most likely take way over a year and it will be months before he really feels "normal" again. He will have good days followed by bad days and eventually the bad days will go away.

Many of us also dealt with a bout of depression so be on the lookout.

Many of us also suffered what is called Hypothyroidism where the thyroid is basically burnt out by the scatter or direct radiation and for some reason it doesn't crap out until months post Tx. If your not familiar with the symptoms just look it up.

Make sure he gets a good amount of calories now and for the next year or so. I tell people 3000 calories a day and don't worry about weight gain, as it just doesn't happen.

Tell him not to get discouraged. Tell him that just about everything will return to normal but it may take a lot longer than you both want it to.

You need to congratulate yourself but at the same time realize that this ordeal is only partially over as the recovery can take a long time. The sooner you can both get adjusted to this new normal life, the better.

Thank you all. Your responses are very encouraging.

Today was a down day - worried about long term limitations and length of recovery time (we were forewarned), on top of the months of tx we have already endured. But what are the options?

It's the first time my husband and I cried together since initial dx. During tx the nurses repeatedly said, "What a great team you two make." My reply was, "That's because we were a good team before cancer."
Lottie

Lottie:

I understand how frustrating the whole recovery period can be. It seems to take forever to feel better. When progress has been made sometimes you can slip backwards. Its very difficult sometimes.

Please try to realize that right now its still way too early to be worried about long term limitations. Even when I was 6 months post tx, it wasnt anything to even worry about. Your husband can only heal and recover as quickly as his body will aloow. It will take months maybe even years. There are other long term effects that still could come out. As far as options go, cancer is devastating plain and simple not just to the patient but also caregiver. Im really sorry to have to give you this info, I know its not easy for you.

One thing that might be helpful for your husband with healing is hyperbaric oxygen treatments (HBO). Do a search on here or also on the main site about it. Thats the one motivating factor in my recovery that helped me to heal and feel better. HBO helps with so many things that it could help your husband. Check with the doc about vitamins too. Hydration and nutrition are still a huge factor in his recovery.

Its ok to cry, we all do. Cancer stinks!!!!!

Hi, Lottie,

A really important factor in your husband's treatment is that many people on this board had radiation/chemo for about 35 treatments but did not have induction chemo. Your husband had about 6 weeks of induction chemo with three types of chemotherapy drugs BEFORE he began the combo radiation/chemo. He had 2 or 3 more rounds of cisplatin than did folks who had cisplatin/radiation and he had taxoture and 5-FU as well. That extra chemo may have caused more - or more intense- side effects. My husband had the same treatment as your husband and the recovery time post-treatment was slower than what people typically report on this board following radiation/chemo only. He had some mouth sores and bad mucositis for about 6 weeks post-treatment with a very gradual improvement. I think your husband's timetable for improvement may be different than for many others on this board but wanted to share my experience as my husband is doing quite well now.

Christine - I will take your advice and try to stop thinking long term right now. Actually, it's my husband who was good at taking one day at a time, until recently. Nurses also warned us that slipping back is not uncommon but when it happens it's heartbreaking to watch.

Sophie - Thank you for reminding me about the induction chemo issue (Cisplatin & Taxotere were given one day + continuous 5FU drip X 5 days). MO certainly did warn us that this was very aggressive tx and would make side effects more difficult. It seems so long ago that I forgot. Team at Dana-Faber agreed with this plan.

I'm going to bed and will try to start fresh tomorrow.
Lottie

The other day, when I was contemplating a visit to Dr Haakenslash to see what was up with my two lesions, I found myself making plans for bad news -- Not depressing plans, but realistic plans based on what I have read here on this forum.

I've now had three surgeries in my mouth and on my neck (plus harvesting tissue from my wrist and then from my thigh to cover my wrist), numerous biopsies and scans, conventional radiation, but no chemo -- Compared to some on this list, I am still waaay ahead of the game -- No chemo, no tooth-pulling, no osteo-necrosis, no bone surgery, no trach stoma, still got a tongue, can eat stuf and swallow, can still talk, thyroid still works (albeit not so well) and so on.

Guess what? All of the things above are still survivable, it's just the fact of getting used to them and taking them in stride. It's called adaptation, and it requires not looking back but looking forward.

And not expecting things to change too quickly -- Celebrate the good changes and don't worry about the timing!

The Taxotere alone is tough stuff. Having such aggressive treatment is definately going to cause long term effects. But, that being said, you will get used to your new "normal". That is a term I learned on this board and it is a great term. Just do your best to take one day at a time. That is something I have to work at but it is getting easier. It can be overwhelming to look too far ahead. Keep coming back here-this is a great place for advice and just to vent.

Sue