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chemobrain?

manna1qd's picture
manna1qd
Posts: 48
Joined: Dec 2007

I am a six year survivor of breast cancer, and four rounds of andriamycin/cytoxan. I also experienced surgical menopause five months after I finished the chemo. I am wondering if anyone is dealing with unusual forgetfulness. I will appreciate anyone who is willing to share their current experiences. I am not sure if I am "normal" or if I need to be evaluated for this.

Racht's picture
Racht
Posts: 40
Joined: Nov 2005

Hi, I am a lymphoma survivor. I had adriamycin and 3 other drugs known for this and other side affects. I have struggled with this very thing myself now for over a year (mine started after treatment). Drs don't really recognize this as a legit side affect (to save you the trouble of bringing it up and being stared at like a deer in the headlights)
personally I have found regular chiropractic adjustments (to keep the nervous system running as efficiently as possible) and taking a pharmaceutical grade fish oil has helped. Other than that- it is a whole new world for me and I'm learning to adjust. I won't waste time bringing up to drs anymore. That's just me though. I wish you well and I hope things improve to your satisfaction.

CherylHutch's picture
CherylHutch
Posts: 1399
Joined: Apr 2007

I'm sorry to hear your doctors don't recognize chemobrain as a side affect of chemos. I have found my experience (here in Canada) to be the exact opposite. Before I started my chemo treatments a year ago, it was actually my oncologist who brought it up as part of the discussion we had on the chemos (5FU,oxaliplatin and an oral one that, yes, I've forgotten for the moment and would have to go look it up).

Chemobrain is a known side affect of chemo. Not necessarily with all chemos and not everyone experiences it. I guess that is why they haven't quite narrowed it down because not everyone experiences it and those that do, experience it to varying degrees. Likewise, when you get over it it is not an overnight thing... it just seems that gradually you aren't forgetting things the way you did at it's worse. Even for those of us who have experienced it, it's kind of hard to explain it.

Then, add menopause to the mix, and it's really hard to tell what is menopause related and what is chemo related. I had a hysterectomy 6 years before I was diagnosed with colon cancer, so was already in menopause when I started my chemo. And no, the memory loss caused by the hysterectomy had not disappeared yet by the time the chemo started.

So, I guess it's the old saying, did the chicken come before the egg theory? In my case, did I already have menopause-related memory loss and the chemo just made it worse, or did the chemo bring on more memory loss in the form of chemobrain?

Either way, my doctors were very sympathetic to my frustrations and said to just wait and see... it should get better once the chemo finished... and I think they are right. I don't feel as frustrated now, even though I still do have bouts of not remembering.

davidsonxx's picture
davidsonxx
Posts: 137
Joined: Mar 2007

I had FOLFOX (5FU, leucovorin and oxaliplatin) for rectal cancer. I also had a hysterectomy along with my colon resection to remove the tumor. I had chemobrain really bad. Once I stopped the chemo it got a lot better but I still forget things. I don't know if it is from menopause or left over from the chemo. I am almost a year post chemo and still have problems. I used to have a really good memory and never had to write things down to remember them. Now if I don't write it down I sometimes forget it. It doesn't happen all the time but often enough that I try to write everything down now. It's frustrating.

blueroses's picture
blueroses
Posts: 527
Joined: Jul 2008

I am an 18 year surivivor of nhl through an autolous bone marrow transplant with total body radiation. My chemo brain has gotten worse over the years and add to that confusion, and other cognitive changes, memory - yikes, pretty bad. I leave out whole important points in conversations and often therefore give people the wrong impressions because I haven't given them all the info, very frustrating, then I have to go back and tell them what happened then I just feel stupid. It's awful. Whether adriamycin had something to do with this cognitive hastle I don't know but I wouldnt be surprised.

However what I do know for sure is that adriamycin is a big cause of heart damage, or can be. I developed congestive heart failure during my BMT and before that noticed new irregular heart beats. 18 years later I have been now fitted with an emergency pacemaker after almost dieing of extreme atrial fibrulation and now also am on several drugs to also regulate beat. I still get head rushes from hell and am close to fainting on many occassions and have spent many evenings in an ambulance and at the heart institute. Just make sure that your heart is monitored on a regular basis and if you feel it skipping beats immediately tell your doctor and have them refer you to a good cardiologist. I have two cardiologists I found myself, one being an electrophisiologist who specializes in all things electric in the heart. Depending on your condition you may or may not need an electro cardiologist. Just be aware adriamycin is known for this side effect, its called adriamycin induced cardiomyopathy. Say that fast with a bunch of grapes in your mouth. hahaha.

Take care.

Dreamdove's picture
Dreamdove
Posts: 175
Joined: Sep 2008

I am 15* months cancer free (ovarian) but I still am not the same and no one really understands this except those who have cancer. Thoughts go out of my head fast, I'm forgetful, and don't drive as well as I used to. Yet I am able to have a basically normal life and I have a job. I read somewhere people can have something called "chemo dementia." I believe it! My teenaged daughter doesn't understand this. She thinks I'm just getting old. How do you like that? I'd like to do some research on this. I cope by writing alot of things down. I even space out more often. I'm 52, not all that old.

slickwilly's picture
slickwilly
Posts: 339
Joined: Feb 2007

Dreamdove. I am 53 and my brain says I am 20. Whenever I screw up my daughters just say "chemo brain". Like dropping speghetti all over the floor last night or having the spoon of sauce fly across the kitchen. And my dog sure hates getting left out in the rain. But Chemo brain or whatever you want to call it exists. 5 years out I can't learn as fast and things still frustrate me. Reading a book is hard when you can't remember the characters. I was once so bad I could not multi task at all so I have come a long ways. From what I understand the University of Michigan is now doing studies on women and children about this subject. Some foreign countries are also working on it. Over the years it was thought that cancer patients were just not active or using their brains. Or that all the stress was causing our symptoms. I think we all know that is not the case. I was involved in community projects and kept using my brain. Yet when I returned to work I could not multi task. It took months of crossword puzzles to get my brain working and thinking properly. Now if I could just remember when I am cooking. Today it was burnt garlic toast. My wife has a firm belief that I will someday burn the house down and she might be right. But I keep trying to have some sort of life rather than sitting on the couch. And I will keep trying to do things I should not be doing because the option is feeling worthless and I hate that. Having a sense of humor helps. I told my dog to get his toy. I tripped over his toy after he threw it under my feet. I didn't know he already had it! My wife and daughter were laughing so hard they fell off the couch. At least I am amusing. Slickwilly

blueroses's picture
blueroses
Posts: 527
Joined: Jul 2008

I am 58 and also suffer from chemo brain and my story is scattered through this section of csn so I won't bore you with details. Just wanted to say that without a sense of humour, people have a much more difficult road for sure. Keep up the Yuks, better than most pills in a bottle !!!!!!!!!!!!!!!!!!!!!!!!!!!!

blueroses's picture
blueroses
Posts: 527
Joined: Jul 2008

Many survivors talk about 'chemo brain', I have it and it now isn't only forgetting, it is creeping into not being able to explain myself verbally, have to write it down. I have to write out symptoms and things to doctors now as simple notes for myself to remind me when I am in the appointments don't cut it anymore. I also leave out key points in conversations and that can cause problems, leaving people I am talking to with wrong impressions as I realize later I have left key points out. Words appear even in type that when I go back to check it all I am shocked to see there, it's just weird. Anywho I could go on and on but YOU AREN'T ALONE. Tell your daughter to do her homework online about many many others who have this side effect after cancer treatment. Slowly the medical establishment is coming to terms with this. SLOWLY. I am a 20 year survivor of non hodgkins lymphoma.

blueroses's picture
blueroses
Posts: 527
Joined: Jul 2008

I have had chemo brain for sometime now and it seems to be getting worse, I have written about it in here before. It is creeping into not only forgetfulness but confusion and excluding key points in verbal conversation. I am going to have some memory tests soon to see where this thing is going. You mentioned adriamycin in your blog. Have you had any heart flutters or anything like that? Adriamycin caused heart damage for me but don't jump to any conclusions about your adriamycin since I had the grand daddy of all cancer treatments, a bone marrow transplant but after the first chemo session a year and half before the transplant I started to notice skipped beats and this must have been the start of the damage. Adriamycin was used then too. Just a caution to watch your heart. Hopefully you are being monitored for heart issues.

beachgypsy
Posts: 7
Joined: Sep 2008

I am a survivor of hodgkins lymphoma and just started experiencing chemobrain in the past year. never even heard of it till 2 days ago. I have been cancer free for 7 and a half years and did not know that side effects could show up so long after the fact. It started right after I started taking the pill CHANTIX to quit smoking. I think that is what triggered it. Not sure it's getting any better but I am adjusting to it. Seems I have a new side effect every month. I deal with them as best I can. They're like a daily reminder of everything I've been through and just how short life really is. Doing what ever I can to enjoy each new day I am blessed with, although at times I feel as though I have to force myself. And at the end of the day I'm glad I did. There are much more important things in life than sitting around worring about the things I cannot control.

artizan's picture
artizan
Posts: 60
Joined: Oct 2008

I am a 54 year old, 9 year breast cancer survior. I had 4 rounds of A/C and even now I have trouble with chemo brain. As I get older I suppose menopause becomes part of the mix but I know that specifically I have trouble remembering number and date related things. I cannot keep numbers in my head. I am still good at math and can do much of that in my head but if I count something and have to remember that number, I'm in trouble. Paper and pencil have become my best friends.
Sheila

Dreamdove's picture
Dreamdove
Posts: 175
Joined: Sep 2008

artizan, I am an 18-month ovarian cancer survivor and still have chemo-brain. I don't know if I will ever be the same. I have to function at my job and sometimes I must look to others like a total scatterbrain or idiot. I don't think anyone not having gone thru chemotherapy would understand this. They just think it's senility. But I just turned 53! Even as I am writing this I have to go back and fill in a missing word or two. Yes, I have notepads and pens around. At least I haven't had blind spots in a while. A couple of times I was walking, biking or driving and a car was coming and I didn't see it. It wasn't there when I turned my head and looked! I'm just lucky to be alive sitting here at the keyboard. I wish there was some sort of disability for this. I have a 14-year old to support and it isn't getting any easier. I hate to think if I had to go thru chemo again. Then ALL my brain cells would be gone. I am just kidding but you never know.......

tasha_111's picture
tasha_111
Posts: 2042
Joined: Oct 2008

Why don't they tell us about this? My cancer society peer support worker told me about this, Thank God She Did, or I would have thought I was going completely mad! I can't DO money anymore...........I count 20$s as 10$s and I totally screw up in the shops all the time, it is so embarassing. I have other days where I am so dizzy I dare'nt even walk to the car, or drive it. I emigrated here to Ontario Canada from england 6 years ago, I still get in the wrong side of the car and wonder who pinched the steering wheel, I go to change gear and open the door and fall out ! I can deal with roundabouts BUT these all way stops?......Heck I get out of my car and direct traffic until it has all gone then leap in and take off at 90mph! Maybe this isn't chemo brain....Just a blond moment.

artizan's picture
artizan
Posts: 60
Joined: Oct 2008

I wondered myself about what would happen if I was so bad I couldn't function. Would there be disability? I don't know. Thank God my husband has taken over the bill paying (after I made a $400 error in the check book). I do try to take my vitamins. Somewhere I read where vitamin E, CoenzymeQ10 are good for the brain as well as ginko. I try to take Lutein for my eyes. I am a little sporadic about taking my vitamins but I think it does help. I try to stimulate my brain by learning new things and doing word puzzles everyday. Besides the difficulty with numbers I find myself dropping the last letter of words I'd write. I think that has gotten better but it is frustrating!!!!!!!! Wish I had the answers!!

Dreamdove's picture
Dreamdove
Posts: 175
Joined: Sep 2008

I don't think they tell us side-effects of chemo ahead of time so we don't start expecting them. Maybe there are people who don't get chemo-brain, I don't know. I don't remember my mother ever mentioning it or complaining about her mental faculties 20 years when she went thru cancer. I never even heard about it before I had cancer. How many people do? I always think wouldn't it be so wonderful if they could just zap the tumors with a laser instead of a person going thru surgery, chemo, etc. With ovarian cancer like I had, my uterus, fallopian tubes, ovaries, cervix, lympe nodes, "fatty apron", and even appendix were removed. It would have been alot easier if those tumors could have been zapped away. No hospitalization needed. But sadly we are only in year 2008, not 2060.

MARINABLUE
Posts: 1
Joined: Sep 2008

I am glad to hear its not just me! I had chemo while I was pregnant and then had it 6 months after my daughter was born along with radiation. I am so scatterbrained and I never was before! I find it hard to focus and it has been over a yr since I had my last treatments.
I thought it was just from the early menopause (I had cervical cancer stage 2). I just wish they made a magical something to make me feel like "normal" again. I am allergic to Estrogin (hives that look like I have been beaten with a willow switch). Argh!! Any thoughts??

artizan's picture
artizan
Posts: 60
Joined: Oct 2008

Oh, that wasn't meant to be funny but.....
I am beginning to see more information now where chemo brain is recognized as being real. I was infact informed of it before my treatment as well as the possible heart related side effects and many not so significant effects as well. I had A/C which was described by my onco nurses as the "big guns" chemo. I don't think my mom has chemo brain and she is now 80 years old. I don't know what drugs she was given or at what doseage. I suppose that makes a lot of difference. It is a struggle but I am thankful to be alive even though life is very different. I suppose any of you currently seeing an oncologist could inquire as to whether there has been any brain scan research on women before and after chemo. They are learning so much about the brain and its function these days.
Blessing to you all this Thanksgiving season.

artizan's picture
artizan
Posts: 60
Joined: Oct 2008

I searched for "medical research, chemo brain" and then for "chemo brain" and found that there is a lot going on - studies, drug tests, etc. I am about to play brain games that were a link from one of the sites. www.lumosity.com
I guess there's still hope.

Dreamdove's picture
Dreamdove
Posts: 175
Joined: Sep 2008

I've heard that it takes up to 10 years to get brain function back. I don't know how much that varies with each person and the type of chemo one has. I can put up with the forgetfulness, etc. but the fact that I nearly got run over by a car a couple of times was another story. Also, I had brain freeze a few times where I was driving down local roads and all of the sudden I didn't recognize where I was even though I should have. The worst thing is that other people don't understand. Before I had cancer I never heard of it. My mother never mentioned it. So I suppose most people don't realize how it affects the brain, they just know about the hair loss. That's all you hear about.

artizan's picture
artizan
Posts: 60
Joined: Oct 2008

Dreamdove,
I don't know but it may be that mental impairment would be covered under the new ADA law.

Dreamdove's picture
Dreamdove
Posts: 175
Joined: Sep 2008

Artizan, I read that but have to admit I didn't understand most of it the way it was worded. It needs to be put in simpler form for people like me lol. It would be nice if dissability included the permanent side effects of chemo such as chemo-brain. The thing is, how would mental impairment be proved? In my case I am functioning but everything takes extra effort. But if I had to go thru chemo again, I might be concerned about losing more brain function and lose my job because of the mistakes. Also losing my drivers license. That would definitely be something to look into if my cancer comes back. Not only for mental impairment but because physically I might not be able to manage working then. I had to return to work six weeks after my surgery. I worked 25 hours a week the whole time I was going thru chemo because I had a daughter to support. It was tough sometimes but I just kept myself going.

sandybe
Posts: 40
Joined: Aug 2008

I've had the brain freeze thing too. I think I need one of those bumperstickers that says "If I look lost, just tell me where to go". I have been driving on my way to work before and suddenly forgot where I was going. I actually had to pull over on the side of the road just around the corner from my house and try to remember where I had to go. I even knew I had to go to work, but could not remember where that was. I called a friend the first time and kind of beat around the bush with a conversation and found out where I had to go. The worst thing is, this has happened more than once. It seems that things and people that I have known for years I always remember, it is things that are within the last year that I seem to have blocked out. The other day at work I could not remember the name of a coworker. I have worked with this person for the past three months. I actually had to ask someone her name because it still did not come back to me an hour later, then I forgot her name again in the afternoon. Talk about feeling stupid. I can't even remember what I had for supper last night. I don't think my doctor quite understood until I brought a friend along to an appointment and she told him exactly how forgetful i really am. Now everyone knows I'm nuts! But that can be a good thing, they can just lead me in the direction I need to go. I did find one thing out though on my last doctor visit, my vitamin B12 was low, apparantly this can cause some added mental confusion. The B12 shots have helped improve some things but not take it away totally. I'm a few years away from menopause yet, things could get really exciting then. As long as I can find my way home, all will be good. This may make you laugh but, I carry ID with me everywhere I go just in case! lol!

Dreamdove's picture
Dreamdove
Posts: 175
Joined: Sep 2008

I do the same--even when I take a walk I carry my ID. Chemo must do similiar things to people because you sound just like me. Oh well, we carry on as best we can. At least I can still work and carry on the basic functions of my life.

Pnktopaz10
Posts: 56
Joined: Oct 2008

I have NHL and my oncologist told me about chemo brain after I told her that I could not think straight. I thought that I might be going crazy because I could not remember something I said a minute ago. I finished chemo and radiation about 2 weeks ago and my brain is beginning to work again but I remember the silliest things. I cannot multi task~ I have to finish one thing and then move on to the next. I have an attention span of a gnat and I am hoping that it will get better. The fun thing about chemo brain is that I can read books that I have already read and they are like new to me. Saves trips to the library and book store. My onc said that it will get better but it takes a long time. It has made me tentative with driving for example but I do seem to accomplish things. Cancer is a life changing experience~and I have the feeling that this is one of the changes. As you can see by the responses you are not alone. There are a lot of us out there muddling through. Take care and think good thoughts!

Dreamdove's picture
Dreamdove
Posts: 175
Joined: Sep 2008

I wanted to add another thing to this subject of chemo-brain. It's what we CAN do to help ourselves that I feel should be studied. For example, that certain foods and vitamin supplements might help. Omega 3 supplements or foods that have them in them (such as flaxseeds and certain kinds of fish.) I take flax oil softgels. I've taken different forms of flaxseed such as whole flaxseeds, ground flaxseeds, flaxseed oil but it seems easier for me to take the softgels. Some people take fish oil supplements. I've done that but I prefer the flaxseed. They both have Omega 3, which is supposed to be good for brain function. There are cereals out there containing flaxseed also. A healthy diet, of course, is very, very important as we all know. Avoid artificial sweeteners. I rarely have used artificially sweetened foods because I don't like the aftertaste but I did chew sugarless gum. I stopped that recently. Supposedly artificial sweetners (including Splenda) cause brain fog in healthy people. So in cancer patients, all the more so. Exercise is very important for brain function as well. Now that winter is upon us, we who live in the colder climates have to struggle to get our bodies moving when we really just want to hybernate (and eat comfort foods.) And you have to keep using your mind. Keep reading and doing other activities that encourage the brain to function. Balancing my checkbook when my statement comes in the mail certainly works my brain! Some people enjoy different kind so puzzles. I am sure there are many other things that would help brain function.

artizan's picture
artizan
Posts: 60
Joined: Oct 2008

I agree with most of what you said but I'm afraid of flax seed. Prior to my diagnosis of breast cancer I was following a breast health regimen of eatting flax seed and soy. There was some suspicion that it may have contributed to my aggressive, atypical cancer. I certainly agree about the artificial sweeteners. I never ingest them!! I too like puzzles and do some online ones daily. I use my brain at work and try to do math calculations without the calculator just to keep my brain active. I live in northern Illinois and I know the temptation to hybernate - oh to be in Hawaii. I don't take everything he recommends but Dr. Weil has a questionaire you can fill out to see what supplements you should take. I do take Coenzyme Q10. Here is what the National Cancer Institute has to say about it.
Coenzyme Q 10 is a compound that is made naturally in the body. The body uses it for cell growth and to protect cells from damage that could lead to cancer (see Question 1).

Animal studies have shown that coenzyme Q10 helps the immune system work better and makes the body better able to resist certain infections and types of cancer (see Question 5).

Clinical trials have shown that coenzyme Q10 helps protect the heart from the damaging side effects of doxorubicin, a drug used to treat cancer (see Question 6).

In 3 small studies of coenzyme Q10 in breast cancer patients, some patients appeared to be helped by the treatment. Weaknesses in study design and reporting, however, made it unclear if benefits were caused by the coenzyme Q10 or by something else (see Question 6).

Coenzyme Q10 may not mix safely with other treatments. It is important that patients tell their health care providers about all therapies they are currently using or thinking of using (see Question 7).

Coenzyme Q10 has not been carefully tested in combination with chemotherapy to see if it is safe and effective. Because coenzyme Q10 is sold as a dietary supplement rather than a drug, it is not regulated by the US Food and Drug Administration (see Question 8).

Dreamdove's picture
Dreamdove
Posts: 175
Joined: Sep 2008

Artizan, I have never heard flaxseed oil linked to breast cancer but I have heard of processed soy products causing cancer. I never use them. No processed soy products in my diet. I had ovarian cancer and my mother and aunt had breast cancer. Ovarian and breast are genetically related. I will take no hormones or products that mimic hormones, such as soy. In Japan they don't usually eat processed soy. You always hear about the low incidents of breast cancer in Japan and how they eat soy but it isn't processed soy they are injesting. However, many processed foods contain soy and it is under different names so for all I know I could be eatting abit of it. I don't eat many processed foods but there are a few frozen foods I occasionally eat. And occasionally a salty snack like Cheetos or Doritos, which may contain soy for all I know. But I don't eat those often anyway. So if I was to seriously look into all the foods I eat, I wouldn't be surprised if I find soy or soy derivitives. But it is something to be aware of. I don't need to have breast cancer, too.

artizan's picture
artizan
Posts: 60
Joined: Oct 2008

I am not sure if it was the flax seed or the soy or just my time to get cancer but it sure seemed like there may have been some link. I had a clear mammogram in late March/early April and by the end of May I had a palpable tumor that was growing aggressively. I guess now I am suspicious of getting on any "band wagon". Thanks for the info on soy.

artizan's picture
artizan
Posts: 60
Joined: Oct 2008

Dreamdove,
I took the time to do a little research tonight and found that as you say processed soy products are a problem. It was interesting, however, that ancient methods involving fermentation seem to be fine. I also looked up flax seed and as you say it seems to be beneficial in preventing cancer. It is hard to believe that soy products are being forced on consumers and is being called good for you.

Dreamdove's picture
Dreamdove
Posts: 175
Joined: Sep 2008

Artizan, I don't think companies that produce these processed soy products even realize that they might not be good for all people--afterall, they are a source of protein for vegetarians and those trying to cut down on red meat. And many people have problems digesting milk products so turn to soy milk. I don't know about flax seed preventing cancer--I was eatting them everyday BEFORE I was diagnosed with cancer. I just use flax oil to help brain function and I find it good for my skin and hair. I haven't really looked into it's other purposes. I do not believe it is harmful, however. But I can understand your fear, that maybe your breast cancer may have been caused by something you were taking. Who knows? Twenty years ago my mother had breast cancer and just shortly before had a normal mamogram. I couldn't understand why it showed up normal and then suddenly she had cancer. I don't believe I have done anything to bring on ovarian cancer. I breastfeed all 3 children (supposed to help prevent ovarian cancer) and had a tubal ligation (supposed to lower chances of ovarian cancer.) I have always been thin (being overweight increases chances of cancer, supposedly) and was never a heavy drinker. Never smoked, always got exercise. Never took hormones. So I can honestly say looking back that I can't place a cause for the cancer except perhaps genetics and even genetics is supposedly just 10 percent. Pollution, chemicals, additives, stress, poor nutrition, etc. might have a bigger factor. Even electronic equipment we use. Cell phones, microwave ovens, who knows? Maybe something just goes wrong in the body. A cell starts multiplying.....

artizan's picture
artizan
Posts: 60
Joined: Oct 2008

Dreamdove,
I have to say that I did everything that was supposed to prevent cancer as well but my case is genetic. I am overweight but my thin sister got cancer and died at age 40, so who knows. I guess it doesn't really matter for us but I don't want a recurrence and I wish there were some miracle prevention that would protect my children and my nieces. I recently started taking fish oil and coenzymeQ10 in addition to my regular vitamins. I have to say that my mind seems a bit clearer and I am not as tired. I've been exercising more too. We have a fitness challenge thing happening at work. You haven't said how you are doing?

Dreamdove's picture
Dreamdove
Posts: 175
Joined: Sep 2008

Artizan, I've been in remission for 18 months from stage 3c ovarian cancer but more and more I have the feeling that it will come back. And I can't do anything about it. I can just hope it won't. I actually don't know what I should be doing to prevent a recurrence. I take some vitamins and try to eat well. I'm in pretty good shape for a 53 year old but I don't work out in a gym. During decent weather I walk or bike. Plus my job is physically active. I haven't heard that there is anything to prevent ovarian cancer from returning. I have one child left at home, a 14-year old and I have to be concerned about what will happen to her. I guess I should be grateful that I've had this time because there are many others who haven't in my type of cancer. I asked my doctor for a year and I got more than that. My next checkup is Jan. 8th, 2 years exactly from the surgery. I didn't even realize that until recently and that appointment was scheduled quite a while ago, at my last checkup. I wish something could be done for all survivors of cancer to prevent a recurrence but I'm afraid they haven't found anything short of a miracle. Even those who do all the right things can't prevent it. I don't want my children to get cancer either. But I'm helpless to prevent that either. All I can do is hope that it doesn't happen to them. I was always a very healthy person before this. Rarely ever needed to go to doctors. I took my health for granted. Now I don't. Maybe it seems I'm giving up but I gave it all I had for a long time. One year ago I thought it came back because on Christmas night I developed a bowell obstruction and had to be hospitalized. But they couldn't find anything. Last checkup they found some abnormal cells in a pap test but not cancer cells. I am supposed to be retested in Jan. Just 3 months before that the test came out fine. So it could be that this test will be fine. However, I still have abit of spotting, which I've had for a year or more. But it hasn't gotten any worse and my CA-125s have been great. I do feel more tired lately than I have since the surgery and chemo. Sleepiness comes over me more and more. I do worry but what good does it do? So many people on here are so much worse off than me. I've been good for quite awhile. What more can I ask?

artizan's picture
artizan
Posts: 60
Joined: Oct 2008

Dreamdove,
I pray that you will have a good checkup!!! It is hard having had cancer. It seems that we wait for that "other shoe to drop". We know, rationally, that worry does no good but its a hard thing to overcome. Earlier this year I read "A New Earth" and followed the online class that Eckart Tolle, the author, and Oprah offered online. I am now better able to focus on what is right now and not on what has already happened or what is in the future. Live in the moment and I pray that you will have a long, healthy and happy future.

Dreamdove's picture
Dreamdove
Posts: 175
Joined: Sep 2008

It is always a challenge to live a normal life, yet waiting for the "other shoe to drop." I don't do anything different than I did before. I'm still living my life but the only real difference is that I don't really date anymore. I tried that and it didn't work too well. Even before I had cancer it didn't work too well! It is never easy to have a relationship when you are a single mom. But I did try over the years. I read all these things on here about people's cancer returning and I'm grateful I've been in remission for 18 months. I've done 2 things this last summer I've never done and I'm glad I did. If it does return I may do couple more things if I'm able. What about you? Have you been able to do a thing or two you always thought about doing but never did? Did you see the movie "The Bucket List?" It doesn't have to anything that dramatic--even just contacting an old classmate maybe or taking a small trip.

artizan's picture
artizan
Posts: 60
Joined: Oct 2008

I have had so much more time than you have had to do things since my cancer was 9 1/2 years ago. I can't say that I have conquered anything big but I do live more confidently for myself. I am no longer afraid of what others will think or say. I have been given so many blessing in these years. My family has grown to include two sons-in-law and 3 soon to be 4 grandsons. I have seen my son graduate high school and college and I still have the love of my husband. There have been ups and downs but that is life. Four years ago we had the great joy of going to Hawaii and would love to go again. We have finished the restoration of a house that sat empty for 40 years and are involved in saving a building in our downtown. I guess I have take some risks that I would not have taken before. I am trying to conquer fear, fear of the unknown, fear of the what if and I guess I have made some progress. You seem like a very strong person and I wish you all the best that life has to offer. I pray that much love and joy will come into your life.

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Dreamdove
Posts: 175
Joined: Sep 2008

artizan, looks like you are doing what you are supposed to be doing. Sure maybe there is fear at times but it's not possible to live without some fear since you are human. More and more people are surviving cancer or at least treating it as a chronic illness. My mother's never came back and it's been over 20 years now. But I remember when she used to tell me she was afraid it was coming back because she had an ache or pain somewhere in her body. She hasn't done that in years. A person can easily get caught up in all these "cures" or natural substances that are supposed to prevent cancer and as you said, how do you know for certain that didn't make it worse? Keep on living your life, that's what I say.

Aquagirl18
Posts: 45
Joined: Apr 2003

Hi I know this is probably a stupid to ask but since I am not familar with the term chemobrain can someone tell me what it is? I had neuroblastoma at around 13 months and was also treated with adriamyacin (sorry if its spelled wrong). I experienced several late effects as a result and I am still dealing with them today. I have cardiomyopathy, several learning disabitlies in math and science, low growth hormone, a curved spine and I experience hot flashes that happen out of the blue. I also had radiation and surgeries.

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Dreamdove
Posts: 175
Joined: Sep 2008

Chemobrain or chemofog is when you have undergone chemotherapy and have experienced some nonfunctioning of the brain during the time of chemo as well as long after, often even years after. Forgetfulness, short-term memory loss, spacing out, blind spots(when something is there like a car, etc. but you don't see it), and probably other things, too. You could be driving and all of the sudden you don't know where you are even though it is a familiar road. You think maybe you are going crazy but then you go on a website like this and other people are describing the same thing. Doctors and scientists don't even know really what goes on in the brain during chemo. So many people complain about this side effect that now they are starting to take it seriously. I hope. My mother never mentioned it when she went thru chemo 20 years ago. I wonder if it was even noted then as a side effect of chemo. I'll be typing on here and read it back to discover I have missing words in my sentences!

artizan's picture
artizan
Posts: 60
Joined: Oct 2008

One of the first things I noticed was that I would drop the last letter off of words as I would write them. Now I have difficulty with numbers. I can't remember them. If I have counted something at work I can barely remember the number until I get it written down. I use little notes a lot more. I have trouble with recalling information I know very well. I have a method I use to try to help me remember things (names especially). It seems that if I mentally go through the alphabet one letter at at time that I will often identify the beginning letter of a name that I am trying to remember and then after thinking about it for a while I'll remember. The brain is a funny thing. My onco did tell me about chemo brain.

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