Hi I was dianosed with SSC in July this year. I was a very healthy 58 year old guy. Quite active, I had 40 days of Radiation and 8 weeks of chemo, cimpactin and eubitrx. It was pretty tough, I was on lots of pain meds for about 8 weeks, patch plus morphine, It has been 9 weeks since YX and I am just OK. I still use the PEG for 20% or so of my cals. I have a very hard time drinking thin liquids like water. I drink alot od ensure. I did lose about 35 pounds.

By bigest trouble is fatigue. I am often so tired I can hardly move. It is quite frustrating and depressing.
I did start anit depresentants almost 2 weeks ago.

so that is me

Welcome to OCF. The fatigue is a common ailment most radiation patients endure. Unfortunately it can linger around for months after treatment ends. Congrats on finishing your treatments.

Hi Tristeve and welcome to OCF.

I have not had the same treatment as you but I know from being on the forums here that what you are feeling is not uncommon. I'm sure other people will chime in about their experience with the PEG and how they used it. One thing I have learned is that it is important to continue to swallow and use those muscles. Do you take the Ensure in the PEG?

In reagrds to the anti-depressants...a lot of people take them. Cancer has a way of causing depression and anxiety. I take Lexapro. If you started taking them 2 weeks ago you're probably not feeling the full effects yet, they can take up to 6 weeks.

You did have a lot of treatment so give yourself time. You have found a wonderful group of people who are sure to help you and make you feel better. Knowing that you are not the only one makes a big difference.

Hi tristeve,

When I was done with treatment I was very exhausted. It all came on so gradually that if just felt normal. As time went on I very slowly gained strength, and it was so pleasant because I had forgetten what it was like to NOT be fatigued all the time.

I did keep active and exercised, which may have helped the recovery.

Best wishes,

Chris

tristeve,

I must assume from your PM to me that you are a biker and by your name possible a tri type guy. I also see you are 58 so perhaps you are just like I was when I went through my Tx.

I was riding my bike (still am) 100 miles a week and this Tx knocked the crap out of me. I was weak as a kitten for a good 4 months post Tx. I couldn't even lift a bottle of water to put in those coolers for months I was so weak. I did get back on my bike sometime about 4 1/2 months post Tx and I still had to much dry mouth to ride more than 7 seconds without having to sip water. Not competitive to say the least. Then came Tax Season and our BRUTAL WINTERS down here so it gave me another 5 months to recover and by then, even though I still had dry mouth conditions, as long as I didn't try to carry on a conversation I was fine. Over the next few months my stamina came back and actually I was a tad faster and went up hills a lot easier (being 30 pounds lighter might have helped!!). Anyway my point is this recovery can be a long process so give your body time to heal.

Re the dependence on the Peg, at your recovery point you are doing GREAT only using it 20% of the time.

If you get a chance update your Signature Line like most of us so that we can know more about your Dx and Tx each time you post.

Congrats for completing Tx.

Hi, Tristeve -

Like David, I am a cyclist and was riding 100+ miles a week before my diagnosis and tx. As if the surgery wasn't enough, the radiation and chemo meant I've been off my bike since June. I've only JUST started riding my mountain bike on easy trails for about 45 minutes a go, a couple of times a week. The first inklings of energy are just starting to return, and I am about 10 weeks out of treatment...and there are days when I still just want to lie around and rest because of the fatigue, so I just let them happen as they will.

In short, this recovery takes a much longer time than probably any of us was ready to face when we got into this! So hang in there -- you WILL be back, but you need this time to heal and recover. It's hard.

Welcome to the forums.

David,

Could you describe a BRUTAL WINTER in Gulfport for me?

Anytime it dips below 60. Burrrrrrr

That sounds just terrible David. How ever do you deal with that freezing weather? Do they even sell ice scrapers in FL? Do you even know what they are?!?! lol

Yes but they have rubber on the blades.

Hi Tristeve,

it took Martin months to get his energy and stamina back. But what started his recovery was his daily walks up and down the steep High street. He'd drive to the town, then walk all the way down to the bottom (1/2 mile), then back up to the top with a break to chat to his friend the security guard in the Pound Shop, then up to the top where he had a Latte as a reward. The street is a big hill so the return was quite challenging! He could hardly do it at first and was breathless, but after a few days and weeks of this he noticed improvement.
You could borrow a dog if you don't have one and take it for a walk. The consultant told us, walk walk walk and walk and your energy will come back, don't forget your water bottle though. After a couple of months you'll be able to cycle.
Cecilia

Hi, Forum,
I was diagnosed with oral cancer in May, and had surgery on my tongue and lymph glands right away. I spent the summer going through radiation and chemotherapy. I have never smoked in my life, had an occasional glass of wine in the evenings, and was negative for the HPV. Go figure! This has been the hardest thing that I have ever done. I had never been in the hospital except to give birth, and was rarely sick. I am back to work now, but still have problems eating and with fatigue. I am also going to physical therapy for my shoulder on the side where I had the surgery. I am having my PEG tube removed on Friday (yea!)that will make getting dressed a lot easier.

Hello Steve..and Zenga,

I myself suffered for well over 16 months with fatigue and weakness after rads/chemo and surgery. My medical team had chalked it up to CRF (cancer related fatigue) and I took that as what I suffered from. My quality of life was horrible, I was an extremely active person before cancer (athlete, wrestler/grappler/boxing runner, weight lifting etc) and most days I could barely get out of bed. I started going to physical therapy but found the 15 minutes a day would put me down for days on end. I tried several methods to overcome the physical fatigue and weakness (dosing oxy, energy shots, etc..) and had some results but nothing sustaining to get me back to my old self.

I recently stopped using my opiate pain medication and low and behold, my energy levels went way up and I started to return to myself again. I was on fentanyl, transdermal patch for pain and dialed as high as 200mcg/hr but had gotten down to 50mcg/hr when I quit. The thing with the transdermal patch is it is actually activated by heat. The hotter your body tempature or the hotter the patch gets the more medication released into your system. Of course you won't feel this immediately...but you will feel it the day after and for a prolonged period of time as the meds pass through your skin into your blood stream.

Opiates, especially fentanyl, cause fatigue, weakness, depression among other nasty side effects. It is great for pain and has a purpose, but also doesn't come without a price.

If you are still on pain meds this may be your issue. Also CRF could still be the cause. For me I lived with the crf explanation...and when I got off the fentanyl it all came clear to me.

hope it helped, good luck and keep your spirits up

Eric

Hi, and welcome to the group. I was diagnosed in March, so I am 2 months past where you are. I did not have surgery, but I have just over the last coule of weeks gotten to where I can eat most thing well. My jaw still gets tired from chewing, and my mouth does not open very far.
I lost a lot of strength and stamina. I have begun taking longer and longer walks to build back up.
It takes a while, give it time.

Welcome, Tristeve. I too had difficulty swallowing thin liquids. My speech therapist suggested a product called "Thickit" available in most drugstores. Give water the consistency of nectar and doesn't taste terrible. May help as you really need to keep swallowing stuff or the muscles forget how.

Have any of you had problems with numbness in your feet? I was told that could be a side effect of the chemo. My Dr. said that I may have it for a while.

That is so coincidental! I saw my oncologist yesterday. He said the nunmbess was due to the chemo.
I am 10 weeks post tx and have experienced numbess in my hands and feet. It was very bothersom a month ago and has gotten quite a bit better but I still have numbness in my feet.
BTW I hax 8x cisplatin and eubutrex

Steve

Has anyone else had this, and, if so, how have you relieved it? My Dr. basically said I might have it for a while, and there wasn't much I could do about it. I do try to prop up my feet when I can, and that seems to help somewhat.

Thats an unusual side effect. It happens to me too. I never connected it with my cancer treatments.

I had only Cisplatin and I was never told about a possible side effect of numbness and I never experienced it either.

This forum is great! It's nice to know that others are going through the same challenges, and I'm not alone!

Yes, that's been a big help for me and now that I'm back to eating (almost) normally and other areas of my life are slowly retutning to normal, I hope that helps for those who have a hard time seeing the light at the end of the tunnel. It is there and, no, it's not an oncoming train.

Hi Tristeve,

My husband had the same treatment as you ( almost the same). He is slowly just now gaining strength back. He goes for walks and each day he gains a bit more strength back. He still drinks ensures to supplement. I would say that his strength started to come back after he got off the pain meds ( morphine) for severe mouth sores. He has pretty bad neuropathy in his feet and his taste is off and salvary glands affected. Each day is a day towards improvement. He lost 30 lbs and is very slowly gaining it back. I think 4 pounds so far. Hang in there, you will heal!!I'm sure he would speak with you if you would like. Take it easy. Your body was put through torture!

Vanessa ( wife)

That does sound like me! I am 11 weks out today. Off the opiates for a couple of weeks. Mostly pain free. I eat like a mainack now steaks, fish, walffles with whipped cream, I even had onion rings the other day. I am still quite weak and do try and walk every day. It is a long journey back, I take it day by day.
Next week is a biggie, I will have my PRG removed and my first PET scan.

Steve

Wow,
Sounds like your are eating a lot of different stuff.You'll gain back your weight in no time. Are you able to tast pretty well? Glad to hear you are getting the PEG out. Nice not to have a tube coming out of your stomach! We will be thinking of you in RE: to a clear PET scan. For us it was hard to move forward until we got the results!!

Vanessa

Steve,

Don't be surprised if you don't gain any weight regardless of how much you eat as your recovery will consume a ton of calories without you even realizing it. I was downing 3000+ calories a day post Tx and I didn't start to put back on weight until my 2nd year.

David,

Thanks for the reality check. My husband is eating quite a bit also and his weight is creeping back up very very slowly. I'll keep reminding him it takes time. He is also going to the gym everyday which I think really helps his healing and mental state.

Vanessa

Vanessa,

Of course that also expends calories.