Just Diagnosed with Cancer? Chat with Experts

Tuesday, October 21, 2008 csurvivor06, Community Member, asks

Q: side effects years later after chemotherapy

It has been almost 2 years since my bilateral mastectomy where I was diagnosed with stage 4 and 3 aggressive tumors in both breasts.  I went throgh six months of aggressive chemotherapy and have seen my onocologist every six months since then.  Recently I have had back and leg and feet problems.  I was told by one of the doctors I have been seeing that I have some severe nerve damage and that the cause was from chemotherapy.  What side effects am I going to have to watch for now including how much more nerve damage can I expect to have.  Just trying to get a handle on this since I did not know of any side effects at the time of chemotherapy.  Am I going to have to watch for other side effects that cause alot of pain in the future.  I am only 49 years old.

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Answers (7)
PJ Hamel, Health Guide
10/21/08 10:30am

Hi - That's a question that's impossible to answer, unfortunately. Our bodies all respond so differently to chemo. There's no cut-and-dried "Here's what your long-term side effects (they call them "lasting effects") will be," unfortunately. Ask if your hospital or cancer center has a survivorship program or clinic. It's a new initiative springing up that deals with long-term cancer-related issues. That would definitely be the place you could get some answers and help. Good luck - PJH

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Angi, Community Member
10/21/08 10:30am

I understand your problem all too well.  I am 34 and 3 years ago I had a mastectomy followed by chemotherapy and an aromatase inhibitor.  Shortly after the pain I felt in my chest and arm (due to removal of lymph nodes) began to spread throughout my legs and feet - as well as my hip.  My pain management doctor attributed this pain as chemotherapy nerve pain and prescribed me lyrica.  I've been on lyrica for over a year now and my pain is more manageable.  My arm no longer constantly tingles as it did before, though I still get a weird sensation if you touch the back of my arm.  My chest no longer has the pain it had - I can now even feel certain areas which I was told I would never regain sensation it.  The pain in my legs/feet, etc. is also so much better.  Lyrica is mostly used for Fibromyalgia nerve pain, and nerve pain associated with diabetes - but under the right circumstances it can help with nerve pain from surgery and chemo.  Ask your doctor if it would help your pain....it's worth a try!

Take care!

Angi

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Aaron, Community Member
4/11/12 2:53am

I am 38 years old and at the age of 27 I had surgery for colon cancer. It was just a small tumor and was contained but they still took 10 inches of my colon out and I had to do 6 months of chemo as a follow up. I'm am having back problems, problems with burning pain in my feet ( especially when standing for long periods) , and now I'm having knee pain , pain in my right top shoulder , pain in my knuckles of my left hand , and have a restless leg syndrome like feeling in my body that affects me at random times. I have tried the anti-inflamatory drugs and Lortab for pain but this does not help at all. My dr. seem clueless and has done blood work and everything is normal. Any help or advice would be awesome!!!

 

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PJ Hamel, Health Guide
4/11/12 4:54am

Aaron, all of any of these symptoms may or may not be related to the chemo you had. I think, as survivors, we tend to blame EVERYTHING on cancer - but it's possible there are other, non-cancer-related things going on here.

 

That said - have you been seen by someone at a Comprehensive Cancer Center? The best oncologists and researchers are at these top facilities, and they'd probably have the experience to be able to identify which, if any, of these symptoms might stem from the chemo - as well as how to treat any underlying issues. Good luck - cancer's turns out to be a lifelong condition, doesn't it? PJH

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Aaron, Community Member
4/11/12 1:23pm

I have not seen an oncologist in years. I do get regular blood work and colon screenings though and everything is perfect on those. I'm thinking I have a combination of things. I have noticed that when I eat meat I have more foot pain , which is probably gout. I have several of the symptoms for rheumatoid arthritis and asked my doctor about it and he said I didn't have it.??

 

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ispwork, Community Member
6/ 7/12 1:54pm

THe Comprehensive Cancer Center in my area is Moffitt in Tampa. They said if you aree not in current treatments for cancer and if it is remission they cannot see me. What other choices do people have. Its nothing but a big runaround.

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Phyllis Johnson, Health Guide
6/ 8/12 7:11am
I suggest starting with your current primary care doctor or oncologist and ask them to make the call. Sometimes a doctor's referral is the best way to get an appointment. I know it is frustrating from the patient's point of view, but if a cancer center has more requests than time slots for appointments,they need some guidelines to manage the overload. Reply
Phyllis Johnson, Health Guide
4/11/12 5:37am

Aaron, I'm 14 years out from diagnosis, and my doctors almost always start by ruling out a cancer recurrence for any problem I develop.  Fortunately, so far I've checked out benign for cancer each time.  So I agree with PJ that you want to be seen by a specialist in colon cancer who will know about uncommon side effects from the treatments you had when you were 27.  With all that joint pain, it sounds like you might be developing arthritis.  I don't have any scientific evidence for this, but a lot of my cancer survivor friends feel that they developed arthritis and other routine health issues of aging at a younger age than people who didn't have chemo.  Once you have ruled out dangerous causes of your pain, you may find that this is just something you are going to have to live with.  At that point a physical therapist and/or a pain specialist may be able to help you find the best combination of exercise and medications to help.

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Aaron, Community Member
4/11/12 1:39pm

Thanks for all the info. I think it might be arthritis as well. I know I have it in my lower back. I did do physical therapy for my back last year and it did help some but the cost was just getting to be too much for me. I still do a lot of the excersise and some yoga stretching which helps some. From what I've seen on this site on some of the other post I'm wondering if I might have some nerve damage as well??

 

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PJ Hamel, Health Guide
4/11/12 2:29pm

Nerve damage can be hard to pin down, Aaron; and it could very well be this is what you're experiencing. Not much you can do about it, unfortunately... I hope you're able to find someone who can help you... PJH

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Phyllis Johnson, Health Guide
4/11/12 7:20pm

Drugs in the taxane family are often associated with nerve damage.  I don't know whether these are used for colon cancer.  From what my oncologist and neurologist have told me, it would be unusual for nerve damage from a taxane drug to develop so long after you have finished chemo.  Of course, unusual does not mean impossible.  If you want to pursue the nerve damage possibility, I would recommend seeing a neurologist.  There are several different tests that can be done to check to see if you have peripheral neuropathy, and if so, what type.  Good luck.  I hope you find some answers and pain relief.

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Aaron, Community Member
4/11/12 7:33pm

Wow thanks a lot for that info!! I was kinding of wondering about certain types having different side effects. You have been very helpful and I really appreciate it!! I'm wondering now if maybe it's gout flare ups? I'm going to have more blood work done to check my uric acid levels. My younger brother has gout and has to take meds for it to keep it under control. Thanks again!!

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Anita, Community Member
9/10/12 9:48pm

I know that is well past the time you asked your question, but I too had nerve damage in my hands and feet from chemotherapy.  This summer I had 3 sessions of scalp acupunture and I could immediately feel the change in my hands.  After 3 treatments, my hands almost feel normal again.  It may be worth exploring. It worked for me!

 

Anita

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Phyllis Johnson, Health Guide
9/11/12 6:05am

Anita, thanks for sharing your experience with acupuncture.  I know it helps many people with all kinds of pain, so it makes sense that it might work for neuropathy.

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thomas, Community Member
12/10/09 11:49pm

Hi I had non hodgkins lymphoma I waited to long to go to the hospital. So I had a large tumor across my hip bone and the cancer was in my bones and basically was all through me a very agresive large b cell lymphoma. I was in stage 4 also.they diagnosed me dec 14 07. they couldnt start chemo until I got stronger.I was sent home from the hospital before christmas. They told my wife I probablly would die over the holidays but I made it through.they started a very aggressive chemo treatment.If the chemo didnt kill me the cancer would.It worked I thank god first then my oncologist second and my will to fight.8 MONTHS of chemo and then a month for a stem cell transplant where I got even higher doses of chemo but through gods grace it all worked.I have neroprothy in my feet witch is severe nerve damage its like walking on nails with out pain meds I can barely walk.Some days are worse than others. my hands also hurt if I clap yes I know dont clap.And my joints ache my muscles and bones feel like there from an 80 year old man I just have no energy anymore and it all seems to be slowly geting worse.I also still have night sweats.I dont mean to scare you but the doctors dont tell us these things because they really dont know.Theres just to many things to take into account.But I tell you it was all worth it to watch my children graduate from high school. Each and every day I consider a gift from god.He still has a job for me to do on this earth.By the way my name is tom and I am 49 years young.thay also told me I have 50% chance it will be back. The first year I got a pet scan every 3 months now its 6.Remember every one is diferent dont worry life is to short live it enjoy family and go have fun

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Mara, Community Member
7/ 9/12 9:44pm

Hi Thomas,  My Husband Marv Has Large b cell fast moving non hodgkins lymphomia.  He has had 4 different Chemo treatments and the last one almost did him in.  He to get the stem cell transplant but more of the cancer appeared.  He can not sit up for very long and is very weak.  It is a 2 hour dive to get treatment or even to Drs who understand what he is going thru.  Hang in there.  Mara

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PJ Hamel, Health Guide
7/10/12 5:06am

Mara, I'm so sorry that you and your husband are having to go through this. Thank you so much for taking the time, despite your own troubles, to reach out to others by posting feedback on this site. Ihope this fourth chemo kicks in and helps him... PJH

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Christ0pher, Community Member
11/ 7/10 4:09pm

Hey. I just wanted to get on here and talk with people about side effects long after cancer so they will know that they are not alone and that they will be alright. I had testicular Cancer. I did five months aggressive chemotherapy and four surgeries for removal of testicle and because I formed a tumor on my left kidney so they had to remove everything in the area including kidney. And then problems from first surgeries so follow up surgeries to correct things. Anyways, I deal with a lot of health concerns now and I have been to the emergency room about forty times in the last year or two LOL because of some of these after effects. But every time i go to the emergency room it is the same thing. They take blood, they do e.k.g.s and sometimes x-rays and ultrasounds. And then tell me I'm fine and send me on my way. When every time I have literally felt as if i was dying. Very scary. I have had symptoms like extreme dizziness and fatigue. Labored breathing, nausea, irregular heart beats, chills, hot flashes. Sometimes I will be freezing cold while everyone else in the house is perfectly warm and they feel me in wonder like " How are you so cold?"  Intense intestinal pain, chest pain, neck and face pain and numbness, ears ringing, insomnia, A LOT of digestive issues, side pains, sweats, weakness and shakiness. Problems with my vision where I see as if I'm on some kind of opiate or acid. Like seeing trails or blurriness. Some days I feel exactly how I did during an actual Chemo session!!! All of which led to anxiety and panic attacks and at some points, depression. But through it all I've always maintained happiness some way or another so I don't think it was as much depression as much as just being soooo frustrated to not be able to just FEEL GOOD. Some days I do. But more days I don't. but once I realized that these symptoms could be causes of nerves and chemical imbalances and such, i started working on my breathing and self calming. i still get many of these scary symptoms, but now i just relax and make sure to breathe fully and imagine myself being happy and feeling good and it has gotten much better for the fear part of it. So now when I get the weird vision or the pains I kind of just accept it as after effects of Cancer treatment and i am able to maintain happiness and enjoy my days more without the paralyzing fear of dying. I can actually feel good physically now, even when my brain is doing weird stuff. It's been six years since my last chemo-treatment and i'm still going through it. I hope with proper diet and exercise  I will one day be rid of these symptoms. If anyone has figured out anything that works well please contact me and let me know. I would love to be able to feel good and CLEAR MINDED again! like %100. But for those of you like me who still go through it. I think we're going to be alright. I've been to hundreds of doctors who can't explain my problems. I've done many tests. And what they see physically I should be fine. So now I need to heal myself mentally. I think a lot of us do... But I'm there with you...And we will feel great one day! hang in there 8) much love and respect to everyone who reads this and i wish you all happiness health and harmony in your lives. Thanks for reading the whole thing. It kind of helps me feel a little better too 8) Grizzly

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PJ Hamel, Health Guide
11/ 7/10 8:48pm

Hi Grizzly: The mind-body connection has been a huge help to me in the healing process. I meditate every day, first thing, before I get up; it really helps start the day on the right foot. I'm really sorry you've had such severe lasting effects from the chemo. Have you been checked at any of the really top cancer centers, like MD Anderson in Houston or Fred Hutchinson in Seattle, or the NY or Boston hospitals? Check this list of Comprehensive Cancer Centers; hopefully you've been to one. If not, I'd say it's time... In the meantime, hang in there. I'm very impressed at how you're managing to handle this; keep it up! We're with you... PJH

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Amber, Community Member
11/26/10 5:30pm

Hey there! I just wanted to say that you are not alone with the side effects from chemo after many years. I was diagnosed with breast cancer in June 2008 at the age of 34 and went through 4 surgeries, 4 rounds of chemo and 35 radiations treatments. I have been done with everything since January 2009, but still have a lot of the side effects that you state...the blurry vision(which now i have to wear glasses for), night sweats, cold sweats, feeling cold and then feling hot, lots of hot flashes, nerve damage and nerve pain, gastrointestinal problems, chest pain on occaison, rapid heart rate, not being able to think clearly at times,nausea, chills sometimes and then rapidly after that getting hot..alternating, and weakness. They all tell me i am fine too..but i know it's got to be from all the chemo and that there has to be something they can do about the symptoms at least..heck ..i used to be a medical assistant...so i know better...and i ..like you..get tired of being told just to deal with it all. But i just wanted to let you know that you are not crazy..these are real things that happening and they are from the chemo and radiation and that you are not alone

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PJ Hamel, Health Guide
11/26/10 8:55pm

We're all dealing with our personal long-term side effects by ourselves. But as you say - we are NOT alone. We've gont one another to connect with, to vent to, to lean on... Thanks for being here, all of you. PJH

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Robin Worrie, Community Member
7/22/12 11:25am

Amber, I know you posted this long ago, but how are you now. I am almost 5 years out, Stage III Colon Cancer, I need to know are you on disability, I am about to apply for it, I can no longer work or do normal every day things anymore.  Your reply is appreciated, God Bless you and good luck.  We need all of it.

 

Sincerely,

 

Robin Worrie

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PJ Hamel, Health Guide
7/22/12 12:41pm

Robin, if you're in this country, I've found the American Cancer Society can be helpful in dealin with work-related issues. If you have any problems on that front, you might consider contacting them. I hope you're able to regain some health and start feeling better... PJH

 

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Gail, Community Member
9/ 5/12 1:14pm

Hi Amber.I just wanted to say that I understand you completely! I had 10 radiation termnts. in a week followed by 9 mo's. of chemotheraphy.I finished trements. 12/29/09. The first year was fine then BOOM! I have stomach issues with bouts of throwing up.Changed eye prescripts. twice in a year because my eyes kept getting more blury. I have migraines,lost so much feeling in feet,legs and hands. I have osteoarthrts. Ringing in my ears. Difficulty with memory and find that I am frustrated much more easily.My taste has never been the same.My feet ,shoulders,knees,neck and back are so painful and now my fingers. I have nearly fallen down while out trying to shop. There are more symptoms but enough of that. My cousin has been an Rn. for years and has also gone through chemo. treatment twice.She has become diabetic and suffers from many of the same problems that we do.She said that she has seen a pattern with herself and others who have had chemo. She said that it seems that the health takes a leap downwards.I have just been tested for diabetes and waiting to find out results. I placed myself on a diabetic diet three weeks ago and my sugar is much better. I know exactly when the neuropathy began in my extremities,it was my next to the last chemo. treatment. I want to say that all of you  people are brave and the best of blessings to each of you. We will make it! Never give up.

                                             God bless you all,

                                                            Gail

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PJ Hamel, Health Guide
9/ 5/12 5:38pm

Gail, I'm so sorry you're having so many physical challenges, post-chemo. Are you taking any hormone drugs? Because they might be responsible for some of what you're going through, too. I've heard that chemo ages your body about 10 years; and I'm inclined to believe that might be true; if not 10 years, at least some. I feel older than I think I should... I hope you're able to get some relief from some of these lasting side effects soon. Best of luck to you - PJH

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Gail, Community Member
9/ 5/12 11:51pm

Hi Pj. In response to my taking hormones the answer is no. I had non estrogen responsive breast cancer. I actually stay away from soy based foods and I am actually wondering lately just how much hormones are in the milk and meat that we consume.

As for chemo. aging the body. I have told my husband that I feel ninety most days. There is no way at my age that I should feel physically as old as I do. I hadn't heard that chemo. ages you about 10 years but I can truly believe it and I can add another 10 to that LOL! I find that I am unable to be physically active as I have in the past. I am getting the feeling that my Rheumotologist thinks that I am a hypochondriac. I really wish that more physicians would get more education on the post chemo. care of their patients.

In any event we are all wonderful and amazing! We are strong and are overcomers. God bless us all.

                                                 Gail

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Sherry, Community Member
12/ 8/10 9:32am

Hi my name is Sherry. I just recently finished chemo and then radiation for stage 3A breast cancer. I finished the treatments in May, and now it's december. I still feel numbness in my hands and my bones feel like they are aching throughout my whole body, esp; ankles, wrist and hands. I want to run to a physician telling myself that maybe the cancer has returned in my bones. I start thinking that I may have another disease. I'm just not used to being sick. I wake up every so often with my breast hurting really bad, and this is always followed by a fever, that will last for about 24-48 hours. I don't even have many colds in my adult life. Well, "it is what it is".... I'm grateful that I am given a 2nd chance, God is good to me. I hear everyday how others has lost the battle with cancer. I'm happy to be a survivor..Wink 

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PJ Hamel, Health Guide
12/ 8/10 2:06pm

Sherry, are you taking Arimidex, or any hormone therapy drugs? Because these can definitely cause the pain you describe, whereas a bone metastasis generally would NOT cause pain in wrists, ankles, and hands. And yes, chemo takes a long time to recover from; some effects last for years. Most women say it takes a good 2 years to feel like yourself again... so hang in there. I know it's tough; but you sound like you have a great attitude. And stay in touch here, OK? We're happy to listen, advise, commiserate, and otherwise reach out a virtual hand to you. Take care - PJH

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MATHIA, Community Member
4/14/12 10:27pm

Hii I am glad I found this! I am 35 years old, and it has been almost 2 years since I had chemo for Hodgkins and I am just sooo sooo soooo tired of being so tired all of the time, and not feeling well!  I thought at first that I would slowly grow out of it and that it would get eventualy better!  I used to be sooo healthy before chemo!  I know that I had cancer, but I didnt really feel like it!  I felt wonderful before chemo!!!!  Now my feet hurt from nerve damage my fingers go numb, and my body aches alot! Also I have a much harder time, thinking, and memorizing things, I am confused a lot more... And  I feel so incredibly tired all of the time!  I tried working a full time job in Nov and it almost made me crazy!  I couldnt function, I was so exhausted that I couldnt move!  And it only seems to be getting worse!  I know I sound like I am complaining... But like a lot of you I am soooo tired of being looked at like what I am saying is noo big deal!  IT IS A BIG DEAL TO ME!!! I was always healthy before and now I feel like I am  an 80 year old woman with poor health!  I have literally seen 70 year old individuals have WAY  more stamina than I do!  Agggggh I am not at all sure how to handle this and or how to talk to people about it!  I feel like people just DONT get it , or understand at all, and that maybe they think I am just making it up... or exaggerating for attention.. I dont know but I have a hard time opening up and explaining how I am feeling!!! :O(

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Phyllis Johnson, Health Guide
4/15/12 7:10am

Of course, it is a big deal.  You definitely are not making this up.  It takes a long time for many people to get better after chemotherapy.  We are a breast cancer site, so we are not up on the side effects from the drugs used for Hodgkins, but they sound similar to what breast cancer patients experience.  There are some medications and vitamins that might help with the peripheral neuropathy (nerve damage in your hands and feet).  A neurologist is the doctor most likely to be able to help you with that. 

The memory issues are sometimes called "chemobrain."  More and more evidence is piling up that chemobrain is real.

The first step in dealing with this is to talk to your doctor about how you are feeling to make sure that the problem is indeed chemo side effects and not some other underlying health condition.  The next steps to getting well are to make sure you are eating a healthy diet and getting enough rest.  You will want to begin exercising, which will be difficult because of the neuropathy and fatigue, so maybe start with short walks in the morning and evening.  Look for a part-time job or volunteer in an area you enjoy.  Getting out and helping someone else is important for your mental health. 

You are right that many of your friends and relatives are probably ready for you to "get on with your life."  They will not "get it," so look for one person you can vent to who will understand.  There may be a cancer survivors' support group in your area where you could pick up some tips and ideas about local resources.  You will see gradual improvement after chemo, but sometimes it is so gradual it is hard to believe that you will ever feel good again.  Maybe you will never be back to your before cancer energy levels, but you will get better.  Hold on to that hope.

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Karen, Community Member
4/15/12 10:47am

I too experience great numbness in all my limbs, ringing in my ears never stops, I too have experienced vision problems, pain all over, it comes and goes, no energy, sometimes my hands and feet are very cold to the touch, constant digestive issues, memory issues....everything that you all have described.I was diagnosed in 2007 with stage 4 breast cancer. It had spread to at least 14 lymph nodes and down to my ovaries(which the doctors believe may have actually been a seperate cancer). I was given 3 different chemo meds at the same time, every 3 weeks for 5 months, had 4 surgeries(bi-lateral mastectomy included), and 30 something radiation treatments in less than a year. I can relate to the comments of sometimes feeling as though you will die, or overwhelming feelings of something drastically wrong. I will be on Femara for the rest of my life, and I am pretty sure this does not help my side effects. As the years go by,(and I am extremely grateful to God that they do!), my symptoms get worse and last longer. I just want to say that I am happy to have found this page, it has answered a lot of questions and concerns I have kept to myself since most family members and friends DO think that once chemo is over and the cancer is gone there is nothing wrong anymore and it's all in your head. I will talk to my Oncologist in detail now and take it from there. THANK YOU for all of your posts, and May God bless You All.. Celebrate your Survivorship!!!

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Phyllis Johnson, Health Guide
4/15/12 6:56pm

I'm glad that reading about other people's experiences is helping you.  I know it helps me.  As a Stage IV patient and a survivor of two types of cancer, you had more aggressive treatments than most breast cancer patients, so it is natural that the treatments have taken a toll on your body.  Some of your problems are probably related to the Femara, so ask your doctor if a different AI or a different dosage might be appropriate. 

In the meantime, look for opportunities to educate your friends and family about some of the long-term issues that cancer survivors face.  You could help them become more compassionate with every cancer survivor they meet. 

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jenny, Community Member
1/23/13 7:27pm

I feel like screaming out to everyone!!!!!! This is not the way life is meant to be lived. Chemotherapy should be illegal!!! no one should have to suffer this type of pain, my sister 38 yr old mother of 3 is suffering extreme back, hip, leg and knee pain which started 3 months after chemo finished. Totallly debilitated, needing my mother to care for her and her young family. Cancer is painless, treatment is deblitating, I would rather have the silent cancer that is contained by the body painlessley. Natural therapies do no harm and should be the first treatment option not the last. I now know many people have cured their cancers naturally, if only we had of done our research before my sisters chemo treatments. I am speaking to everyone suffering from after effects of chemo, it is not in your head, it is real. You should all film yourselves and your daily struggles and post it on youtube as a warning to everybody, Never do chemo!! Make chemo ILLEGAL its effects are barbaric.

 

 

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Phyllis Johnson, Health Guide
1/23/13 8:05pm
Jenny, I am so sorry that your sister had such terrible side effects from chemo. I would not want to see chemo made illegal because it saved my life. My cancer (inflammatory breast cancer) was not painless. In fact, pain was my first symptom. Most other types of breast cancer are painless at first, but if the cancer spreads, the next stages are often accompanied by pain. I am thankful every day that I am alive to experience chemo side effects 14 years after my treatment. You are right in saying that these side effects are real; however, I would disagree with you about starting with treatments that are supposed to be more natural. I'm glad the people you know had good results from this type of therapy. Unfortunately, the people I know who refused conventional treatment to try alternative treatments first died because of their decision. Reply
David AML M3, Community Member
6/ 7/12 12:31pm

I am a Soldier diagnosed with Acute Promeylocytic Leuk in June 2011.  I have been in official remission since christmas, although I was basically in remission prior to my extended hospital stay ending.  I have been experiencing "chemobrain" or what we have been told it is called, chemo fog since my treatments and it hasn't really changed much at all.  I am starting to experience the joint pains and ghost pains throughout, but I am FINALLY starting to get my strength back.

Of all these things I am feeling, I am planning to do a march to DC to bring attention to certain military aspects of cancer, to raise money for research and funding for the families and patients who cannot afford the best treatment.  I was lucky that my treatment was paid for without question, of course, mine is completely environmental which means the Army caused mine, so... 

My biggest concerns are that I don't know what my treatment is going to result in 20 years from now, ten years from now, even three.  I was in the best shape of my life (had just gotten there) right before my diagnosis, which was actually spotted by my very attentive wife, and now I am very much overweight and just starting to get my BP where it should be again.  I gained weight on chemo, which surprised everyone, yet the side effects of ATRA can be extreme weight gain.  I was perplexed as to why, even when dieting, I was not losing any weight, but after research I understand why.  But there is nothing telling me what I will experience/rather may experience in the future.

Also, I am going to start a campaign to get the mantra of "cancer survivor" changed.  I find the term derogatory as most of those who have conquered this class of diseases do more than simply survive.  So I will not wear the t-shirts, or the like, though I will have my own made until I can get things rolling.

 

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PJ Hamel, Health Guide
6/ 7/12 10:33pm

David, I'm glad you had your cancer diagnosed and, sounds like, successfully treated; the side effects are tough, and can be lasting, I know. But gradually, every

so gradually, you feel better. It takes years; not months. But you get there. And I agree with you about "survivor!" We often laugh about the term in my group of breast cancer friends. In fact, we made ourselves T-shirts for our annual cancer walk that have "survivor" crossed off, and "conqueror" written underneath! Take care - PJH

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David AML M3, Community Member
6/ 8/12 8:56am

The ironic thing about it, those that have not been afflicted seem to stand by the "survivor" tag, and yet, more and more, I meet people that think the same way IF they have had cancer.  I am working with the idea "I Am Profound!"  which actually seems to piss some non-cancer patients off, leading to questions "where is cancer in there?" which of course I reply with, IT'S NOT! that's the point.

I am working on a plan to meet with folks from the American Cancer Society to see about changing it.

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PJ Hamel, Health Guide
6/ 8/12 10:14am

Keep up the good work, David - for all of us cancer conquerors. Thank you - PJH

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Gail, Community Member
9/ 5/12 1:38pm

Hi David. First I just want to say thank you for serving our wonderful country!

As for the chemo brain,I can laugh about it now. However when I was going through it,it was devistatiing to me. I would be driving and forget where I was going. I was teaching a class of young adults and standing in front of the class I totally forgot what I was saying and just stood there like and idiot! I said I was sorry and my wonderful class said we have your back Ms. G. We all laughed about it and anytime it happened they were great.It happened when I was doing consultaions with a student for the service they were doing.I taught Cosmetology so that was no place to mess up! I forgot my social and gave my x-husbands.  I would forget if I had eaten and not remember that I had just talked to someone.I was always appologising and trying to explain it was chemo brain!So many incidents occured but it does get better.As for the weight gain I gained too and I ate very little as I was pretty sick. I was told the weight gain was from the steroids in  the chemo meds.Once you are off the meds the weight will go back down. I was placed on Lyrica and gained 30lbs. in six mo's. I went off and the weight went down right away. Maybe there is another med. the Dr's can try you on. Well David the very best to you and stay positive.I am sending you good thoughts . God bless,

                                                  Gail

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PJ Hamel, Health Guide
9/ 5/12 5:40pm

Gail, thanks so much for sharing your experiences here. It's so very helpful for others to read about what you've been through - as many of us are probably going through something similar. I had a terrible time with chemo brain, personally; much as you described. Now, it comes and goes, depending on stress levels. Well, all I can say is - hjappy to be alive. And God bless you, too - PJH

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Gail, Community Member
9/ 5/12 11:37pm

Hi Pj. Thank you for the warm welcome. It is so encouraging to read about others stories. I have noticed that no matter who we are or where we are from we are like family when we meet and have encountered cancer. I am encouraged by all of you here. Stay blessed.

                                                  Gail

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PJ Hamel, Health Guide
9/ 6/12 4:38am

It's true, Gail - the cancer community is large and very supportive. It's been a great comfort to me these past 11 years, and I hope I've been able to give back some of the love I've felt. Take care - PJH

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melly, Community Member
7/19/12 10:23pm

I had bone cancer when I was 15....now 36 years old still have side effects such as bad shaking of my hole body and bad headches....They did an eeg never found nothing...Had another on this last week and they can't figuer it now waiting on referal to brain doc....

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PJ Hamel, Health Guide
7/20/12 5:17am

I'm glad you're going to pursue this - as research continues to pile up around the lasting effects of cancer treatment, the medical community understands more and more about just what the cancer experience does to a person - and how to deal with it. Best of luck - I hope you're able to get some relief soon. PJH

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Robin Worrie, Community Member
7/27/12 8:24am

I am so grateful to you all for your sharing your stories.  As GOD is my witness, I will bring attention to those who have never experienced these conditions of Cancer know that they do exist.  I told my Oncologist many times about the bone crushing in my body, that I could feel it so badly it would take my breath away, they said no way, that can not be happening, along with every other side effect my quality of life is now me not working, not know how much worse it will decline scares me, I am a giver, not a taker, I do not know how except thorugh GODS plan I will survive the days ahead.  It is painful, it hurts so bad, that to even cry there is burning on the back of my eyeballs, like their on fire.  It is.  And thats the fact.

God Bless you all, and sleep through the pain if you can.

 

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PJ Hamel, Health Guide
7/27/12 12:45pm

Robin, I'm wondering if the doctors you're seeing simply don't know enough about cancer, and its lasting effects? If you haven't already, I suggest you ask for a referral for a second opinion at a Comprehensive Cancer Center, which is a government-designated "best in class" cancer treatment facility; there are over 50 scattered around the country, so hopefully there'd be one not that far from you. It's absolutely worth it getting an opinion from oncologists who are up on the latest research; I can't believe there's nothing that can be done to ease your pain. If nothing else, I hope you've consulted with the folks at a pain clinic, which many hospitals offer. Please don't give up; I think there's help out there for you. And God bless you, too - PJH

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Phyllis Johnson, Health Guide
7/28/12 8:18am

Robin, usually by the time a person is five years out from cancer treatments, she is seeing improvement in symptoms.  Some people do still have pain.  For example, I am 14 years out, and I have nerve pain in my hands and feet.  From your two posts, I get the impression that your pain is getting worse, which is not typical of treatment side effects.  As you work with your doctors to find solutions, be sure to look for other possible causes of your pain.  There may be a new condition other than cancer causing the problem. 

How can a doctor possibly tell you that what you feel can't be happening?  You are feeling it!  So maybe what you are feeling is not within the doctors' area of expertise, so they have never seen that particular collection of symptoms.  Oncologists are focused on saving our lives by fighting cancer, but in my experience, they are not always up on other medical issues (and my oncologists freely admit this and refer me to the right specialist).  If you haven't already, why don't you get a thorough physical from a primary care specialist or internist who can look at your whole medical history, not just the cancer part?  I also like PJ's suggestion about going to a pain clinic.  I hope you find some relief soon.

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Robin Worrie, Community Member
7/28/12 8:47am

Thanks for ypur attention, iit is greatly appreciated, my PCP is handling it right now, he sent me to a Pain Specialist, he of course wrote 2 prescriptions for the oh so famous Fentanyl, I have since weaned myself off of this drug,,,yea,,,,at any rate I am no longer able to work, so now I have no insurance, my pain management Doc made an appt froor me to go get a electrical type reading on my nerves but the appt was made at the earliest 2 months, so I have missed that boat again as I have no insurance, my PCP who I love so very much, he is such a great humanitarian had ordered a MRI of head and neck, his dx is Demyelination.  So we are still waiting for results, should be ny Tuesday this coming week, I have applied fro disability, I am awaiting to hear next step.  I have already heard the horror stories as this can take years, whatever, I can not work and that is a certainty, i make the best of my good days, the bad are really bad and  get through them with God, I just let go,,,I let God take over, they are that bad.  But at any rate, I am keeoing a journal as to have a footprint of my journey, it may help someone in the future, or even myself,,,thanks agaunm for your thoughts, they are always welcomed.  I am going to list what my sypmtoms are, aand they are never known as to when they are worse, and ot how long they will last.  I have hot, and cold chills, mostly cold.  Imagine someone peeling your skin off your body and puring alcahaol on it, I have crushing bone spasms, that literally teak your breath away, they last on a second or 2 max, I kave pinging sharp pains that hit my legs, arms or abdominal area, I have nausea always, and have become immuned to it, i have diahrea on a rgular basis, my left arm is losing it's strength and is becoming numb, as well as my legs too.  I am in good shape, weight wise, I am 115-120, 5/2 eat good, my drink of choice is coke or pepsi, i can not stomach the smell of alcahol and use to love having a beer or 2 on the weekend,,, have not beeen able to do that in over a year.  doing a load of laundry wipes me out, taking a shower, wipes me out,,,somedays are better though i can go to store, only cloes ones, and unlaod my car, and then i have to rest.  I remain positive, and i have faked being good alot, I hate my family seeing me in pain, but now I can no longer fake it. It is what it is.  And with Gods insight I have accepted the fact, now i need to find a way to allow myself some quality.  There have been more days than I would like to say that I cry from the pain, yes, it hurts that bad, but to even cry, the back of my eyeballs sting, like someone is again pouring alcahol on them, so, i try not to cry.  I will be sitting there orstandin somehwere, and tears will just roll down my face,,,my body telling me it hurts.  It is the most strangest thing I have ever witnessed, and yes I would not believe it unless I saw it...well that;s what I would have thought before this.  Please note, I am tough, I am a fighter, and not  a wuss by no stretch, but this, whatever it is, is tough, and sometimes, I think it is winning.

 

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Phyllis Johnson, Health Guide
7/28/12 10:52am

Robin, I am so sorry that insurance issues are keeping you from getting the best possible medical care.  Your PCP's business office may have some ideas for you and/or a referral to a medical social worker who can help you with the paperwork involved in getting financial help so that you can move on to seeing the right medical people.  Your idea of keeping a journal is a good one.  The more information you have about the pattern of pain, the sooner you and your doctors can find out what is causing it.

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PJ Hamel, Health Guide
7/28/12 12:39pm

Robin, this huge range of symptoms doesn't sound cancer-related; though there's no telling, cancer treatment affects all of us differently... The fatigue and pain almost sound like Chronic Fatigue Syndrome - has anyone suppested that? It's tough to diagnose and difficult to treat, but you might ask your PCP about it, when you get your financial situation figured out. As Phyllis says, speaking to a social worker at the hospital can be a benefit in that respect. I certainly hope you're able to get relief somewhere... PJH

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By csurvivor06, Community Member— Last Modified: 01/09/14, First Published: 10/21/08