New Member

Welcome to the group, sorry we had to meet here, but you could not of found a better place for your recovery. I am a caretaker, my husband was diagnosed with Stage 4a, left tonsil cancer in October, and had surgery in early November, treatment started in early December, ended on January 15th.

In my opinion, I started to see some improvement at 4 weeks post. My husband also didn't have a peg and started dropping weight at a scary rate the last week of treatment, so I think that really slowed him down. It takes energy and nutrition is key to feeling better - so he was more than likely a late bloomer. It took about 8 weeks before he started seeing 'ah ha' moments where he wasn't "mr. miserable". And now at 12 weeks out, he looks great, its a new normal hes adjusting to, and he's still healing. The painful spots in his mouth are down to just getting very sore at some meals, not all. It's progress. And as everyone will tell you, it's in weeks, not days.

The good news is that at however slow the uphill climb is, it's up hill!

Congrats at finishing treatment and getting through the worst of recovery..

Ask lots of questions.. we are all here to help and see you through to better days.

Kari (&Dan)

Welcome. I am caretaker for my husband. He was diagnosed with stage 4a Base of tongue cancer with 2 lyph nodes involved in May of 2011. His recovery was slow and he is still on the PEG which he had inserted prior to treatment. However, he did have two surgeries right after treatment. One for excess fluid on the brain and the other for removal of his appendix and part of his colon. They believe the later was caused by blockage, constipation so make sure you stay on top of that. His taste still comes and goes, however he also has swallowing problems. He probably needs his throat stretched but doesn't want to go through anymore procedures.

As for length of recovery, you said it right when you said everyone is different. I have seen on this board people who recover and are back to normal in 6 weeks and those like my husband who are still dealing with issues. I pray you are in the first group. I belive age has a lot to do with it as the younger ones seem to recover very quickly.

Debbie

...and you're discovering....recovery comes in degrees, never in leaps and bounds.  I'm nearly 8 months out of treatment (adjuvent chemo), and almost 10 months out of rads and the improvements are still coming in degrees.  Still have dry mouth, but more saliva than even a month ago....still get taste fatigue, but at 10 bites into a meal rather than 3, mouth totally cleared up of sores at about 12 weeks out. 

Welcome to the forum.....I very glad you found it.

p

Sounds like what I and most of us went though post treatment.  One doctor said I would be worse for two to three weeks after treatment stopped.  Didn't believe him as that did not make sense to me.  He was totally right.  The three weeks after treatment were my worst times.  I could just get enough down to keep close to weight, seldom got out of bed and almost, but never totally, wished I would have never started treatment.

Four months plus two weeks out of treatment I am doing better.  Still very tired and still have side effects.  Improvement is slow but there so hang in it does get better.  Taste very slowly retruning, able to eat sloid foods, almost anythign, even if the food doesn't taste all that great, able to do physical work from 2 to 5 hours a day and paper work about the same amount of time, but not on the same day.  If there is a cancer survior group close I strongly recommend it, very helpful to me.

This is a great group here, but if you can find a survior group where they meet face to face its a great help.

Glad you found this site. This was the best thing I ever fell into on the internet! These people on here are absolutely wonderful and caring people. 

My loved one was very similar to your dx. He was BOT, 2 lymph nodes involved, Stage IV, HPV16+. He did not have any surgery. His tx consisted of 7 weeks Rads and Chemo (Carboplatin & Paclitaxel). He is now little over 4 months out of tx. The few weeks after tx were pretty rough. He did have a PEG tube and that came out about 2 months after tx. He still continued the Ensure and Boost with very little solids for several weeks after tx. He still continues the Ensure/Boost to keep his calorie consumption up, but does eat some solid foods now with it. I believe it was around week 6-7 he was eating things like pudding/jello/soups. Then about week 10-12 he bumped up to mashed potatoes, scrambled eggs, noodles etc. He still, at 4 months out, does not care to eat chicken or a burger unless it is really finely chopped up in a dish. He does not eat breads either. They seem to be too dry and feel like they get caught at the back of his mouth....but it's getting better.

My advice would be to continue to be patient and all will gradually come back. It's a tough journey, but definitely worth killing this beast. Please continue to stay with us on this forum. You will find that so many of your questions can be answered right here. Surely someone has had an experience close to something you may encounter.

Best to you,

~C 

Duneditech,

Big Singapore welcome to you.

I started to feel improvements from the moment treatments ended, whew.  I am still feeling improvements today (13 months post).  When did I start on soft foods?  I tried immediately, but since I could not stand the texture and feel and taste I struggled with down right eating and chose to (happily) drink smoothies for 7 months.  That is the past and I now eat anything I want.  My taster is hitting at about 20%, sometimes better sometimes worse.

All in all, I am feeling and eating good and tasting fair.

Matt

I was stage Iva, scc, bot, 1 lymph node, hpv+ (surgery,rads,Erbitux)

dunedintech said:

Thanks

Hi guys - many thanks for the responses and kind words. Yes, I spend a fair amount of time rinising with the bicarb, salt solution. I also have a magic mouthwash Singapore version which is very handy indeed. Echo, nice spot. I am indeed from Dunedin, New Zealand originally so a kiwi boy living in Singapore. As for support groups they are more or less non existent here so this board is very, very useful indeed. I also have medication for thrush and I am picking that is a common occurance in the recovery period.

I do find it amazing that the DRS gloss over the end of treatment part. You are so geared up to getting though it that the final day is almost anti-climactic and you are left to get on with it. Still, the fact that you don't have to attend the Cancer Centre for that daily appointment is a great feeling. As highlighed slow steps and making sure the focus is day by day knowing it will get better in time!

 

 

 

I can't add anything to what everybody has said (they got it all covered) ...so just wanted to say welcome, sorry of course you have to join our club...but you found a great bunch of folks, they sure help / helped me out ...

Keep us posted ...whispered a prayer all will go well / be well for you guys..

Tim