When to expect improvements?

Ouch_Ouch_Ouch · August 2014

I finished treatment on July 8th for stage 2 squamous cell carcinoma (anal canal lesion, tumor began erupting through my skin while awaiting the surgery date, and local lymph nodes effected). I naively thought that after a few weeks, I would start feeling a lot better. But. alas, no.

I'm weak and have lost more weight after treatment than before. I have an appointment for an assessment at a cancer rehabilitation program, so hopefully that's taken care of.

However, there are a few annoying things that remain. I still can't predict how things will smell or taste. The taste in my mouth is very bitter, just like chewing on a blade of grass. Some foods taste okay while some taste horrible. When does this go away? Soon, please?

The skin in my mouth and throat (probably all the way down) is still very tender, like the underlying skin after a bad sunburn peels away. When will those mucous membranes heal? Please tell me they will heal.

I have been impatiently waiting for the rectal pain to fade away, but so far it is easily reawakened with loose stools. The materials the radiation oncologist's office gave me at the beginning says that in a small percentage of people, it doesn't go away. However, from reading through many of the posts here, it seems like a majority of posters experience pain years after treatment ended. Perhaps people who have healed well and have no pain have no incentive for posting in this forum and therefore skew the results towards people with abiding problems?

My hair never totally abandoned me, but the lost billions of strands have yet to re-grow. If they don't show up soon, with normal attrition, I will be bald. When does lost hair usually begin to re-appear?

Many thanks.

eihtak · August 2014

Ouch......

Welcome, yet I am always sorry to have to say that! Time and patience, then more time and more patience. I am a bit over 3 years post treatment and although I have a colostomy so do not have some of the issues that many have in regards to painful bowel movements I have other digestive/stool concerns. The irritation in my anal area and surrounding for that matter was sore for a looooooong time, months, maybe a year or more, but the good news is that it is not any longer! Maybe a bit more sensitive due to scaring and stenosis, but overall not what I call painful.

My throat, sense of taste and smell gradually returned as well. I remember about 2 months post treatment really truely completely enjoying the taste of a turkey/cranberry sauce sandwhich! It took me a while to realize that I had lost the fine hairs inside my nostrils causing an annoying runny nose for a while too!

I have/had very thick hair and while it got quite thin I never lost it all. The combination of illness, treatment, and stress can cause hair loss for many yet doesn't seem to have any effect on others. I don't remember exactly how long before it started coming back but seems it was 3-6 months and close to normal.

I was on pain medication by the end of treatment daily and continued for a couple months after before weaning off.....that helped me A LOT!! Remember protein helps tissue repair both inside and out so something like greek yogurt is a good choice if that works for you. Its kind of sad, we get through this horrific treatment and the expectation of health still seems out of reach due to the long (often misunderstood by others) road of recovery.

You'll get there, we're here to give you a push!

Be well.

katheryn

judyv3 · August 2014

Ouch_Ouch_Ouch

You will start to return to normal in most areas. I do not have rectal pain anymore. I tend to be constipated so I take Miralax and a stool softener and that keeps me "regular". Sometimes certain foods will trigger a bout of the runs. But that happened before too. I am 7 months post treatment. Eihtak is right - time and patience. And greek yogurt was my go to food when I just didn't feel like eating. That and egg sandwiches. I eat a wider variety now but it took awhile. My hair thinned but stayed and now is its natural color - salt and pepper. I just can't be bothered with coloring it anymore.

Be good to yourself and don't expect too much too soon. You'll get there.

jcruz · August 2014

I like what Katheryn said -

I like what Katheryn said - time and patience. Indeed.

My treatment ended mid-October almost 2 years ago. I think I felt a little better each week after. I continued to go to the infusion center for hydration for 3 more weeks and I began very slow walks probably a week after the end. I lost all my hair but by early January I had enough growing back in that my friends said I had a good Buddhist nun look. I stayed on pain meds until end of January, rectal pain continued for quite a while but improved over time. The tissue may always be fragile. I sometimes experience bleeding and it doesn’t seem to be related to difficult bms - it just happens. I also continued to lose weight because of loss of appetite and that weird taste thing. Again, improved with time. My chemo brain went on for quite a while but also improved. My fatigue may have lasted longer than others - I didn’t go back to work until March (4 months post-treatment) and initially worked only half-time. The fatigue was overwhelming.

I think going to a cancer rehab program is a fabulous idea. I’m not sure there’s anything like that where I live. I certainly wasn’t told about it if there was.

Give yourself time. Call your doctors with questions. Come back here too, about anything.

Janet

Ouch_Ouch_Ouch · August 2014

Thanks

eihvk & judyv3 (I hope I got those right):

Thanks for the encouragement. I am very impatient to feel better. Neither the doctors nor the literature they passed out truly perpared me for the reality of the treatment and especially the aftermath. I asked my primary doctor, colorectal surgeon, oncologist, and radiation oncologist to explain why I should get treated vs not, suffering-wise. All four looked at me like I had two heads and all stated that of course I was going to get treated!

The oncologist and radiation oncologist both told me that I had stage 2 disease, but I just saw the anal cancer section of the Cancer Society's website. According to that, I was somewhere in stage 3 with a less than 50% 5-year survival rate. Knowing that earlier would have given me much more pause to think about getting treatment vs not. Perhaps they didn't think they lied, but exaggerated or used a different scale than this one; feels manipulative, either way. >_<

mp327 · August 2014

Ouch_Ouch_Ouch said:
Thanks
eihvk & judyv3 (I hope I got those right):

Thanks for the encouragement. I am very impatient to feel better. Neither the doctors nor the literature they passed out truly perpared me for the reality of the treatment and especially the aftermath. I asked my primary doctor, colorectal surgeon, oncologist, and radiation oncologist to explain why I should get treated vs not, suffering-wise. All four looked at me like I had two heads and all stated that of course I was going to get treated!

The oncologist and radiation oncologist both told me that I had stage 2 disease, but I just saw the anal cancer section of the Cancer Society's website. According to that, I was somewhere in stage 3 with a less than 50% 5-year survival rate. Knowing that earlier would have given me much more pause to think about getting treatment vs not. Perhaps they didn't think they lied, but exaggerated or used a different scale than this one; feels manipulative, either way. >_<

Getting educated

Your example is exactly why I encourage newbies to get on the website for the National Comprehensive Cancer Network and learn as much as they can about diagnosis, staging, treatment and follow-up for this disease. I went into this totally blind and trusted my doctors 100% with my life. Fortunately for me, it all turned out well, as I had/have very good doctors and am approaching my 6-year survival mark.

qv62 · August 2014

Ouch

Hang in there, I finished treatment the end of June so a week before you and I am still stuggling, I am overwhelmed with fatigue and still quite sore inside. I have good days and bad, I feel a world of defference than 3 weeks ago when I could barely get out of bed or eat, but I just take it day to day, I faired much better during treatment than after. I spent 10 days in the hospital post treatment and felt even worse when I came home. I go back to work Sept 2nd and can't imagine how I will get through the day. My red and white cells are still below normal but all the docs say I'm doing great.If only I felt as good as they say I am lol. I had scans scheduled for next week but had the oppurtunity to get away a few days and now I am rescheduled for the end of Sept. I know this is all temporary but I feel your pain and yes it sucks, hope you feel better soon.

Lorikat · August 2014

I am 3 years post treatment

I am 3 years post treatment and for the most part feel good. I do have chronic proctitus which causes bleeding with no real rhyme or reason. I need to take a little time each afternoon and rest. But I'm older as well. I've been white water rafting, hiking in the foothills and 7 days at Disney World with kids and Grandkids. In other words, I basically can do what I want as long as I know where a bathroom is, LOL! I've learned to use meds so I don't have bathroom problems If I have a whole day planned.

And I believe you are right that many (most) move on when they feel better. I will try to join Martha (thanks, Martha) and others more often to reassure when I can. I had a miserable time with treatment but am so happy to be alive.... Hugs

3

AZANNIE · August 2014

Ouch-_Ouch_Ouch

I sooooo remember those days! I wondered if I would ever feel good again. I lost about 20 pounds and I almost didn't finish the last five radiation treatments - ended up in the hospital. At times, I didn't make it to the bathroom in time - yep - loose stools. Lomotil helped with that. I would go from the bed to the couch.

Now 3 years later I'm doing pretty well. Energy level has returned, but I have to admit that I still get tired at times - could be age, too. I've gained weight. Yes, I still have an occasional accident, but for the most part it takes effort to evacuate since the radiation fried the opening. Once in awhile there's bleeding. As others have said in earlier posts it's the new normal.

The hair on my head thinned and probably took a few months to thicken. Down south is another matter.

The worst is behind you - you finished treatment! About 7 months post treatment I was able to go on a mini vacation.

For quite awhile, I wore disposable briefs (and still do sometimes) when I was away from home.

The healing takes time. It hasn't been that long since you finished treatment. It will get better!

Ann

Ouch_Ouch_Ouch · August 2014

Thank you all

Thank you all for the encouragement. I am taking turns between self-pity, frustation, impatience, and probably depression. Thank goodness my husband is positive and very helpful.

jcruz: Thanks for addressing some of those specific questions. I didn't find out about the rehab program from the oncologist or infusion team, but from the program's brochure. I happened across it one day when I was at the hospital looking at the brochure rack because it hurt too much to sit down in a waiting room. It's called the STAR Program ("Survivorship Training and Rehab"). The rehab people have to be certified in the program: http://www.oncologyrehabpartners.com/ To find a program location, look at the upper right of the page. Here's hoping that the local program lives up to the advertising.

mp327: I hadn't run into the National Comprehensive Cancer Network site before. As soon as I am up to it, I will examine it. Thank you.

qv62: "I spent 10 days in the hospital post treatment" - Yikes! I thought 9 days were bad. My WBC dropped at the last test (last week - from 6.3 to 3.5), but not enough to worry the infusion team, just me!

Lorikat: Just reading about your activities has exhausted me! I can't wait to get back to being able to go unrestrained into the world again like you do. There are cobwebs on my bike and my kayak.

AZANNIE: "The worst is behind you" - Ha! Ha! Ha! So true... ;^) . "I wore disposable briefs" - Even at home, I wear those pads meant for urinary incontinence, but aimed at the rear bumper rather than the front bumper. I take extras with me when I go for appointments as well as clean undies and washcloths. I'm glad to hear that things have improved for you. My fingers are crossed for me, too, as I can't imagine going out to dinner with friends and having to make a failed sprint to the bathroom. Jeepers!

AZANNIE · August 2014

Ouch_Ouch_Ouch said:
Thank you all
Thank you all for the encouragement. I am taking turns between self-pity, frustation, impatience, and probably depression. Thank goodness my husband is positive and very helpful.

jcruz: Thanks for addressing some of those specific questions. I didn't find out about the rehab program from the oncologist or infusion team, but from the program's brochure. I happened across it one day when I was at the hospital looking at the brochure rack because it hurt too much to sit down in a waiting room. It's called the STAR Program ("Survivorship Training and Rehab"). The rehab people have to be certified in the program: http://www.oncologyrehabpartners.com/ To find a program location, look at the upper right of the page. Here's hoping that the local program lives up to the advertising.

mp327: I hadn't run into the National Comprehensive Cancer Network site before. As soon as I am up to it, I will examine it. Thank you.

qv62: "I spent 10 days in the hospital post treatment" - Yikes! I thought 9 days were bad. My WBC dropped at the last test (last week - from 6.3 to 3.5), but not enough to worry the infusion team, just me!

Lorikat: Just reading about your activities has exhausted me! I can't wait to get back to being able to go unrestrained into the world again like you do. There are cobwebs on my bike and my kayak.

AZANNIE: "The worst is behind you" - Ha! Ha! Ha! So true... ;^) . "I wore disposable briefs" - Even at home, I wear those pads meant for urinary incontinence, but aimed at the rear bumper rather than the front bumper. I take extras with me when I go for appointments as well as clean undies and washcloths. I'm glad to hear that things have improved for you. My fingers are crossed for me, too, as I can't imagine going out to dinner with friends and having to make a failed sprint to the bathroom. Jeepers!

Ouch_Ouch_Ouch

I also wore boxer shorts the last part of treatment and for months after treatment. I still use unscented baby wipes- buy them by the case at Sam's Club (their brand) and I still use my trusty sitz bath - my second one now. I have a "just in case" bag in the car. My great niece was born the month after I finished treatment and she brightened things up. Sure, there will be good days and not so good days, but you'll discover that you're stronger than you think.

Ann

When to expect improvements?

Comments

Discussion Boards