Chemo - the gift that also (like radiation) keeps on giving

[weisssoccermom]

I saw the endocrinologist yesterday (finally....after a two month wait to be seen..argh) about the thyroid nodule. He wasn't at all worried about it as I have had Hashimoto's disease for over twenty years....apparently it is a fairly common 'side effect'. Anyway, during the course of my visit, I asked him if chemo, even mild stuff like I was on (Xeloda....only one cycle of oxi), could have messed with my system, my metabolism, etc. I already was informed by the opthamologist that 5FU/Xeloda can and does do a number on our eyes and the effects last. Now, this endocrinologist informs me that the chemo changes our metabolism and he hears the complaint from former cancer patients that they can't lose weight, that their metabolisms seem sluggish, that everything just seems 'out of whack', etc. I remember Gaelen (a former member) talking about how chemo changed patient's metabolism but I guess I had hoped that the effects would be reversed when the drugs were stopped. According to the endocrinologist.....that's just NOT the case. As he said, you're putting toxins into your body....what do you expect? He wasn't rude about it at all....just being honest. He warned me about two other side effects that I might still experience because of chemo (my last dose was almost 8 years ago): muscle pain/weakness and diabetes....although he did say that this far out and I am likely not going to get either. We also talked about my allergies and he said that when a patient has been on chemo, it also isn't uncommon for one's allergies to get all messed up.

Radiation has affected my right hip (apparently very common for people undergoing pelvic radiation...why the 'right' hip....I don't know) and eventually I've been told that it is not unlikely that I will have to have a hip replacement. Apparently that is a fairly common side effect of radiation. I have severe dry eyes for which I take Restasis and other eye drops, my allergies are out of control....to the point where I can't even get allergy shots without a horrid reaction, my hair never completely came back after the Xeloda thinning and now I'm dealing with a messed up metabolism....likely due to chemo. Please, I am not truly complaining.....I know how lucky I am to be here and I am truly thankful for chemo but.....I just wish I didn't have to hear about all of these side effects from physical therapists, endocrinologists, opthamologists, etc. Why can't our oncs and/or rad oncs just be upfront with us and tell us all of this? I just feel like everytime I turn around, I'm being reminded that while chemo saved my life (and for that I am truly thankful), it also has given me some very unwanted and unwelcome side effects and I wonder....what's next?

[mstults]

I agree completely. My side effects have been so minimal compared to most but I do have pretty sever HFS/Neuropathy. If not sure which it is or if its both. The tingling is lots better, especially if I take Neurontin regularly, but the numbness and weird feeling in hands and feet is as bad as ever. Oncologist says it was the Oxaliplatin but I'm convinced it was also 5-FU to some extent. At least I still have enough feeling to drive. Just can't walk long at a time. But I feel so fortunate. I'm alive and have a fairly good quality of life.

[cashmere]

I don't want to sound ungrateful either, but the permanent neuropathy sucks, the joint pain sucks and the extra 20 pounds sucks among all the other little annoyances (# of trips to bathroom comes to mind). I chocked the weight gain up to instant menopause so now I can blame it on chemo too!!!

But I am grateful that I am still here to enjoy my husband and my to giant breed dogs all of which give me great joy!! Happy New year to all!!

[Bob_Weiss]

I developed moderately severe hand/foot syndrome during my 5 months on Xeloda with my symptoms at that time now resolved. But I have since developed very dry skin over much of my body, especially arms and legs. I have to rub moisturizing lotions & skin creams over my body every day or so; otherwise my skin starts to flake off and itch. I can keep this problem under control, but am disappointed that 4 1/2 years after completing chemo, I still have reminders of my treatment.

[Carolinabluetec]

I developed moderately severe hand/foot syndrome during my 5 months on Xeloda with my symptoms at that time now resolved. But I have since developed very dry skin over much of my body, especially arms and legs. I have to rub moisturizing lotions & skin creams over my body every day or so; otherwise my skin starts to flake off and itch. I can keep this problem under control, but am disappointed that 4 1/2 years after completing chemo, I still have reminders of my treatment.

Glad to hear the HFS resolved itself. I am in the "waiting for it to get better mode" on the HFS. I also have dry skin patches and rash from Xeloda.

[weisssoccermom]

I am wondering now if my excessive dry skin is from the Xeloda??? Never thought much about it....just attributed to getting older and my thyroid condition....except that one is under control. One thing that has become apparent is my dry skin/reaction to the allergy shots/testing. I had the actual allergy tests done on 11/18 and I still have a few red scaly dry patches from that. No irritation.....just very dry, almost eczema like in nature. They are annoying because until they go away, no more shots for me. Prior to chemo I never remember having this issues.

As I said, I'm thankful for the chemo....just wish I knew about all these 'side effects' upfront so I don't feel like a new one is hitting me at every turn.

[Ron50]

Whilst I was having chemo I asked my oncologist about long term side effects. He said we are trying to kill your cancer , we will worry about long term side effects if and when you get them. I have severe peripheral neuropathy of the legs hands and feet. I was dxed by a neurologist via nerve conductivity tests . I asked about the 48 sessions of 5fu and levamisole that I had. He ignored me. He told me I had severe neuropathy but because he did not know what caused it he would not treat me. I have severe psoriatic arthritis and ankylosing spondylitis. I see a rheumatologist who is an ex oncologist. He just said that I already know what is making my inflammatory problems so bad , just don't expect any medico to admit it. I see a nephrologist regularly. I have nephritic syndrome of the kidneys. I have had three kidney biopsies that all show problems but none that relate to known kidney disease. At worst I lose over seven grams of protein a day thru my kidneys. When I ask about chemo he just smiles sadly and shrugs. My official diagnoses is an auto immune disease of unknown type and cause resulting in nephrotic syndrome. I take cyclosporine twice a day with a diltiazem enhancement. Cyclosporine can be toxic to liver and kidneys. By using a bp med called diltiazem I get the required serum levels of cyclosporine at a lower dose than normal. Well I have lots of long term side effects from chemo but no one has been able to come close to dealing with them.
When I was dxed with stage 3 cc into six nodes I was told too aggressive , too many lymph nodes . It will get you , you may have three years. I may be cynical but I cannot understand why I have not been contacted to see why I am still alive and cancer free. This month ends my sixteenth year of survival and the start of year seventeen. I would have thought that if they are serious about beating cancer one of the things they would look at is why long term survivors are long term survivors. Ron.

[PGLGreg]

But I have since developed very dry skin over much of my body, especially arms and legs. I have to rub moisturizing lotions & skin creams over my body every day or so; otherwise my skin starts to flake off and itch.

Here's a Neosporin product that works for my wife and me: http://www.amazon.com/Neosporin-Essentials-Eczema-Moisturizing-6-Ounce/dp/B0067JF8CI. (I don't connect my flaky skin with cancer treatment.)

[tif2112]

I am having some of the issues from Xeloda and radiation. Have problems with both hips and my hands/feet are still extremely sensitive to heat and cold. I was wondering though...ever since chemo I seem to lose more hair daily than normal (even my hairdresser commented on it) but could chemo still be the reason? Also I have noticed it is much harder to lose weight and keep it off, I never thought it could be a result from treatment, did they say there was anything that could help it?

[chemo sabe]

First I will say that I am mentally tough and for many years I have understood and accept my own mortality. Waaaaay before being diagnosed with rectal cancer.

But many people cannot accept that diagnosis and really could not accept the possible consequences of radiation and chemo therapy. So the Doctors do not dwell on the possible negatives. And they should not - while everyone will get some side effects, no one will get all of them.

with or without cancer, the direction to look is forward. Cannot change the past. The neuropathy in my feet is more than annoying but what can I do?? Like many other people, I did 6 months of adjuvant chemo. As of Oct 2014, my status was NED and I graduated to annual CT Scans. So I am looking forward to my trapshooting year without doctor interruptions.

So what is your real complaint??

[weisssoccermom]

If you are referring to me, I have no real complaint...per se. However, I disagree that patients shouldn't be informed. It IS the onc's and rad onc's duty and responsibility to inform patients about the side effects...whether or not they happen. Females, for example, MUST be told about the very real side effects from radiation so that they can have the option of being proactive and avoiding problems and/or keeping their fertility if that is what they want. Why shouldn't they have that option?

While I agree that we should always look forward, I also find it upsetting that here I am, almost 8 years from my last treatment, and I keep finding out from other docs that my very real problems such as my facial pain (caused by problems from my port), my extremely dry eyes (thanks 5FU) and now my endocrine issues are due to chemo. If the doctor had told me all of the problems would I have made any other choice? My answer: a resounding NO. I would still have chosen chemo and radiation but.....it I firmly believe that the doctors have a responsibility to be forthright and tell me everything that they know about the drugs, possible side effects...even those that may occur years after treatment ceases.

The FDA requires all side effects, etc. to be posted for Rx drugs....why should chemo drugs be treated any differently? The docs don't make the decisions for me....I make the decision regarding my health in conjunction with my doctor and all the other medical professionals. It is MY life...not theirs and while I seek out their expertise, I still want input into those decisions that affect my prognosis and the quality of life that I might expect because of those treatments.

[helen098]

I think there are so many things that can go wrong they would be unable to tell you everything
I remember the onc explaining about the possible neuropathy
And thinking wow that sounds bad...... Fast forward 6 months or so and I could 't
Put on my bra, tripped over my feet and felt like a electrical
Code was attached to my big tog
I feel very lucky but the neuropathy sucks big time I feel for me anyway it's so much
Worst than the pooping in my pants or even the fear of dying early
I feel there was no way anyone could have made me understand how my
Life could be changed, there was just no way
I remember reading on the American cancer society all of the possible side
Effects and in was terrified during my first infusion, I thought I would die on the
Chemo chair, but I still went and didn't die

The chemo has messed up my metabolism big time
After chemo I was eating 1200 calories a day (NOT CHEATING)
And was gaining 3 pounds a month

[Annb]

Here's another long term side effect--anger that we had to have treatment that gives long term side effects!! I am 6 years out and have worked very hard to get my life back. I have seen a naturopath for 3 or 4 years and I HIGHLY recommend that. She actually pays attention and HELPS with all those many unwanted side effects. (What a thought! Help us get better instead of just telling us that, Yes, that happens. And they call themselves healers! Shame on them.)

If I had the energy to give to such a thing, I would love to be involved in a patients' revolt that wouldn't put up with the attitude that we should be just so terribly grateful to be alive that we should feel embarrassed to complain about how much of our lives have been stolen by the treatment we have received.

I really am better. It is possible to feel good. It is just not an easy road to get there.

Best wishes to you all!

[Raleigh]

I didn't have much if any issues from my chemo, although I haven't started my six month intravenous routine yet ... But I seem to have something messed up with my bladder urinary tract from the radiation. I was 42 years old when they found my cancer, and both my Radiologist and my Oncologist told me they wanted to go more aggressive with my treatments since I' m younger than many of their typical patients, and my body will handle it. I'm all for that, actually I'd rather have an aggressive Doctor fighting my cancer then one who is not!

Everything was good, but noticed something strange going on around my fifth week of radiation. Spasm pain when urinating in the bladder, urethra region. Also the muscles that tense up after peeing, pain there as well.

The pain then, was there, but manageable. Seven weeks later I had my surgery, and for whatever reason... The bladder pain shot up through the roof post surgery. At one point, while still in the hospital... I had the most unpleasant pain of my life, actually I never even knew I could feel so much pain... and it was this same spasming pain. They ran several tests, but couldn't pin point what was causing it.

Move up to now and its almost been four weeks out since my surgery, but I'm still having spasms, and pains related to bladder muscles. I'm going to see a Urologist next week.

I really think my radiation therapy fried my whole bladder urinary tract region. Then it was further irritated with the insertion of the catheter for a few days during my surgery. I hope this isn't permanent... How long does it take to heal from radiation burn? I read that the radiation continues to work on the tissues for several months after the therapy ends? Is this the kind of thing that I feel for years to come?

[kellywin]

Does anyone think that because we are younger we as a group experience these things, but because each one of us is spread out and our Oncology teams don't hear from us "younger people" as a group that they honestly don't know? Most of their patients are older, they already have arthritis or other problems associated with getting older?

I asked my Radiation Doc straight out about my hips, I just recently posted a thread about it, she send me for an MRI, it showed moderate osetoartritis & gluteal tendinosis, worse on the right side. She honestly didn't believe and still doesn't that it's from radiation - but what the hell else is it from? I have such limited mobility, and I have pain daily. And my Radiation doc was completely upfront about the million side effects, very detailed on the side effects for women, encouraged me to see my gynocologist (although while you may be able to stop the damage that radiation can cause, menopause can cause just as much pain during sex and there's little you can do to prevent that. And creams only help to a point).

I've gained 40 pounds since ending treatment. I am only 5' 1", so 40 pounds is a lot. I blame it on the forced menopause and the neurontin. But what the hell - I guess I'll add chemo to the list.

I guess my "complaint" isn't about the side effects, although I do find myself sinking into self pity at times, why was I perfectly healthy 3 years ago and now I live with daily pain & reminders? But I have to remember that I do "live" and I am happy about it. I would not change my treatment plan. BUTT, I would have like a little more ASSistance on managing the side effects. Especially the hip/but muscle pain & problems. And not get a blank stare when I tell my docs about it.