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Probable Physical Confirmation of Chemo Brain

bluerose's picture
bluerose
Posts: 1089
Joined: Jul 2009

I am a 25 year survivor oh NHL and have had many side effects, long term and short, from treatments if some of you don't know me. One of them has been worsening chemo brain or chemo fog as some call it. For years I have known this was from both chemo and total body radiation but no doctors would validate that for years and that caused me alot of distress - no validation. Today that is changing - thankfully for those who are coming behind me in treatments plus changing technology and research as well have hopefully improved things as far as having these kinds of late effects.

For many years doctors didn't think chemo crossed the blood brain barrier in the brain but now they admit and have found some drugs do cross the barrier and do effect the brain to some extent.

Because of my worsening memory and confusion espcially I sought out a memory clinic run out of a hospital and staffed by neuro surgeons who specialized in this, basically it was prior to all of this just for Altzheimer and Parkinson patients. Anywho, I went to be assessed 4 years ago and the testing showed some mild impairment but the CT scan of my head never got done until about 2 weeks ago when I demanded they get it done.

This morning I received a call from my GP's nurse that said that the CT of the head did show some mild changes and that from her perspective did explain why I was having some of the issues I had been telling her about for the last 20 years. You gotta have this stuff on paper, sheeesh. Anywho she said that there are no tumours or anything that even closely said 'cancer' but it did validate what I already knew, treatments can affect the brain, or at least the ones I had 25 years ago. All treatments are different to different people though so not to get too concerned - speak to your physicians prior to treatments of any kind and make your decisions based on what they know today. Take for example my total body radiations that were part of a bone marrow transplant back 22 years ago - I heard that they try not to do total body radiation anymore because of the extra damage it can do and I am living proof they are right about that. I don't know if they still use it in some cases but I know they try to stay away from that overall an exposure. That's tne new route it seems, do as little damage as possible. Makes sense to me but at the time so did blast it with full force and I am here 25 years later so hard to argue with the method. Still there is a price I pay for that longevity. Not whining or grumping, just saying.

Anywho that is the latest on my results. A CT scan done at the same time for my abdomen and pelvis which is where the first NHL showed up showed no changes to a cyst on my ovary that seems to come and go but is totally benign.

And so it goes on. In 2 weeks I have a specialists appt everyday of the week but one for more issues. And so it goes on.

Blessings,

Bluerose

Hondo's picture
Hondo
Posts: 5717
Joined: Apr 2009

Well the Chemo Brain explains some of my problems as I am not old enough to be old yet. I can’t remember people I knew for a long time, they understand but is does bother me quite a bit. Then the next day all at once I remember them and everything about them, but it is too late because I might not see them again for a few years. Even worse it trying to recognized faces and put names on them.

Maybe I am getting old
Hondo

bluerose's picture
bluerose
Posts: 1089
Joined: Jul 2009

I'm pretty sure you aren't getting younger but I could be wrong about that. lol.

I wasn't surprised about the CT I guess really as I have had these symptoms for awhile now but feel the confusion issues are worse and that is so frightening as your forgetting well known friends must be. It's just that when a doctor says we see changes in your brain scans, it's such a shock - I mean they can see an abnormality with your brain. I don't know, maybe it's just me who finds those words shocking. However they said it was subtle changes and I really think since it was my GP's office calling and she isn't a neurologist and doesn't realize I had already talked with the neurologist about what he expects the CT to look like of a long term survivor who has had my treatments so I am pretty sure that's it. I hope. Monday I am going to try to find another one done of my head years ago for a baseline for comparison, if I can find one.

Anywho I guess for me dealing with so many side effects it's hard with the fibromyalgia and arthritis and heart damage from the transplant etc but when you start doing things you don't even realize are off because of brain issues that for me seems like a whole new nightmare. Know what I mean?

Thanks for replying. Hope you are feeling as well as is possible.

Blessings,

Bluerose

Hondo's picture
Hondo
Posts: 5717
Joined: Apr 2009

Yes I know, it is shocking no matter what it is when the doctor is telling you something let alone about your brain. Just remember someday after this life we are going to have a new body that will never get cancer, never get sick, never have side effects, and never have pain.

God bless
Hondo

jazzy1's picture
jazzy1
Posts: 1387
Joined: Mar 2010

Chemo Brain is not fun, as I've endured it but will say, it's better. I'm a bit over 2 years post treatments (chemo and external pelvic rad for uterine cancer) and amazingly my memory is better, but still rely on post-it notes.

Curious when you mention -- "CT of the head did show some mild changes and that from her perspective did explain why I was having some of the issues I had been telling her about for the last 20 years."....what mild changes are they suggesting from scan???? Asking as mom has alzheimer's and dad passed with parkinson's some 19 yrs ago, so I'm always worried about these 2 diseases hitting any of us kids. More reading I do on either of these it's not genetic on alzheimer's unless diagnosed younger years, whereas, mom was 80 yrs. Parkinson's mainly due to environment in for years -- heck dad was a chemical engineer and ran plants for a huge manufacturer of chemicals.

Scans? Read up on all the radiation one is exposed from all these and we're really in trouble. I've been able to convince my oncologist of not many scans as he can rely on a tumor marker blood test every 6 month during follow up.

Boy this stuff is so challenging. Happy you're doing well....sorry about all the side affects from treatments...doesn't seem fair at times. Many docs when we complain about side affects tell us "heck you don't have cancer, so don't complain"...thanks doc!

Hugs,
Jan

bluerose's picture
bluerose
Posts: 1089
Joined: Jul 2009

The hair on the back of my neck stood up when I read what your doc said about your side effects from treatments. It's a classic phrase some old school docs can come up with and it's so unfair and actually lazy and insensitive of them to say. Disrespectfull too, grrrrrrrrrr. You need to take a copy of the many supportive studies and articles from reputable sites that back up things like chemobrain and other side effects of cancer treatments and ask him if he has read them as there is irrefutable proof now on the many side and late effects of cancer treatments and how they impact the lives of many many survivors. The emotional impact alone, never mind the other physical stuff we deal with, is difficult to say the very least and he isn't helping you by sloughing off your medical issues that are no doubt from the treatmemts and in turn are causing you so much emotional distress. GRRRRRRRRRRRRR.

Stand up for yourself in this and seek doctors who will validate your input, you don't need to fight ignorance in the medical feed on top of your fight with cancer. Shame on your doctor.

Blessings,

Bluerose

moonpearlmaggie
Posts: 7
Joined: Oct 2011

Do you take anything for chemo brain? Mine started near the end of my chemo & has gotten worse which lead to depression. My oncologist would not prescribe anything but my GP put me on Ritalin. It worked very well for several years but then the "crazy" stuff started and now I am on Provigil... EXPENSIVE & insurance will not pay for it! If I don't take something I cannot function.. like going to the grocery store and getting five miles from home & not really knowing where I was going. I knew I knew where I was but could not put it all together. Others have numbness but I don't... guess it is all a trade off? MPM

moonpearlmaggie
Posts: 7
Joined: Oct 2011

Do you take anything for chemo brain? Mine started near the end of my chemo & has gotten worse which lead to depression. My oncologist would not prescribe anything but my GP put me on Ritalin. It worked very well for several years but then the "crazy" stuff started and now I am on Provigil... EXPENSIVE & insurance will not pay for it! If I don't take something I cannot function.. like going to the grocery store and getting five miles from home & not really knowing where I was going. I knew I knew where I was but could not put it all together. Others have numbness but I don't... guess it is all a trade off? MPM

Hondo's picture
Hondo
Posts: 5717
Joined: Apr 2009

Sorry to hear your Chemo Brain is so bad. I had CB for a while but I am still about to function with out medicine just have a hard time with dyslexia, but I had that when I was young anyway. Keep up the fight and never give up.

God Bless and keep you
╠╣ONDO

bluerose's picture
bluerose
Posts: 1089
Joined: Jul 2009

There was a chemobrain post somewhere on this board where a member listed a bunch of things that people have tried for chemobrain. Of course, having chemobrain myself I can't remember where it is on the boards. lol. Maybe search the postings under the chemobrain title and see if you can find the list. It is compiled from suggestions from various doctors on what they think that might help a person. It varies from antidepressants to vitamins. My doctors mentioned only the antidepressant combo with some other drug but I am on so many meds right now, all with side effects of course, I am going to wait til I can't function as well before I pop more pills. It depends on how you are able to function or not as to what you will take to take a chance on some sort of relief. It's all about balancing symptoms to possible side effects I guess.

Someone wrote about the idea that chemo/rads 'might affect the brain' and actually it has now been proven that some chemo drugs do cross what they call the blood=brain barrier where years back they thought that no chemo crossed into the brain and affected it. I was told this by a neurosurgeon I saw not long ago. Read up on cancer treatments and chemobrain or chemo fog as some call it - it's interesting and you will see you are not alone in this for sure.

I am a survivor of over 2 decades, yikes I'm old, lol, so the treatments of my day were more severe and not as well monitored as they are today so I suffer with more side effects than say some who have more recent treatments. Still some drugs still affect the brain but possibly for not as long as they did for me. I am not up on comparative therapies over the years, just going by all the people on this site who have contributed their experiences since I started on this site a few years back. Also too some of my doctors have acknowledged the changes in treatments over the years and the side effects and possible outcomes.

I have written a new post today discussing Nano technology, you should read all you can about it, very interesting and I think a big step in the right direction in cancer treatments.

Blessings,

Bluerose

MzzKimba2002
Posts: 10
Joined: Mar 2011

I finished my chemo/radiation treatments last Feb. I too have what they call Chemo Brain. I at times have short term memory, a deep depression that comes out from no where. I have good days where i have no mental problems at all.. then there a days that i can't think straight if my life depended on it. My CB started when i was about 1/2 through my treatments. Crying at the drop of a dime. My radiology Dr. has mentioned that he does believe some of the treatments must get to the brain to cause these issues.

My concern now is he wants to do WBR (whole brain radiation) as a prevenative measure. I am in complete remission with limited small cell lung cancer. I have NO idea as to what to do. What scares me is the Dr. has made it very clear that there is a strong chance i will have short term memory issues if i have the treatment done. I already suffer from brain issues..has anyone else had this done?

bluerose's picture
bluerose
Posts: 1089
Joined: Jul 2009

Sorry to hear you are having so many issues with chemobrain. I have never heard of Whole Brain Radiation but if I were you, before I let anyone do that kind of treatment, I would DEFINITELY seek a second and maybe even a 3rd independant consultation on your case. Again, I know nothing about this type of treatment but to my way of thinking why would you radiate the whole brain to stop issues that already exist from treatments to the brain? I don't get it or did I read something wrong? I understand you to say that you didn't have brain cancer but another type of cancer? Right?

Anywho do get another opinion and like I said I have no knowledge about the uses of whole brain radiation so I might be way off here so do pass on any other info on your case and suggested treatments so we can all learn about this together.

All the best.

Bluerose

MzzKimba2002
Posts: 10
Joined: Mar 2011

Here's my situation bluerose. I was diagnosed last December with limited small cell lung cancer. I finished treatments (radiation/chemo) last Feb. Since my treatments, my scans have come back clear of cancer. The tumor (they said it was the size of a walnut) I once had in my right lung is GONE. I had one lymph node involved and that too is clear. I am scanned every 3 months.

A couple of months ago my radiation Dr. suggested to me for "preventitive purposes" to have the whole brain radiation done. He explained to me that since my cancer was limited to ONLY my right lung I am a candidate for the radiation procedure. He explained to me that from their findings, my cancer along with many other types has shown that within a couple of years, there is a good chance that my cancer could come back, but in the brain. if i don't get the brain radiation, my chances of getting brain cancer is as high as 60%. If i do get the radiation done, then that drops to 20%. There is also a chance i may never have this issue. There is also a chance that even if i do have the procedure done, I may still get brain lesions. A definate side effect is short term memory loss that is permanent and God knows what else.

As i explained in my earlier posting, at age 60, plus chemo, i already have short term issues. This is why i was so concerned about messing with the brain even more. Anyone else I know who has or had cancer, say they have never been told of having this done.

I did get a 2nd opinion and that was he agreed with my Dr. to having the brain zapped. BUT...... he also mentioned these factors can weigh in on my decision and I needed to weigh the facts. Again I already have some what of chemo brain,short term memory issues, and i am 60 years old. That is not old...but many people my age that aren't sick are having memory issues!! That's the norm! I say "why rock the boat"??

My radiology Dr. did say that while they say chemo does not treat the brain.. they are convinced to a point that chemo MUST get some what to the brain and that would explain "chemo brain".

Thank you for replying back to me. I love this site and the people that are on it are great!

MzzKimba2002
Posts: 10
Joined: Mar 2011

Here's my situation bluerose. I was diagnosed last December with limited small cell lung cancer. I finished treatments (radiation/chemo) last Feb. Since my treatments, my scans have come back clear of cancer. The tumor (they said it was the size of a walnut) I once had in my right lung is GONE. I had one lymph node involved and that too is clear. I am scanned every 3 months.

A couple of months ago my radiation Dr. suggested to me for "preventitive purposes" to have the whole brain radiation done. He explained to me that since my cancer was limited to ONLY my right lung I am a candidate for the radiation procedure. He explained to me that from their findings, my cancer along with many other types has shown that within a couple of years, there is a good chance that my cancer could come back, but in the brain. if i don't get the brain radiation, my chances of getting brain cancer is as high as 60%. If i do get the radiation done, then that drops to 20%. There is also a chance i may never have this issue. There is also a chance that even if i do have the procedure done, I may still get brain lesions. A definate side effect is short term memory loss that is permanent and God knows what else.

As i explained in my earlier posting, at age 60, plus chemo, i already have short term issues. This is why i was so concerned about messing with the brain even more. Anyone else I know who has or had cancer, say they have never been told of having this done.

I did get a 2nd opinion and that was he agreed with my Dr. to having the brain zapped. BUT...... he also mentioned these factors can weigh in on my decision and I needed to weigh the facts. Again I already have some what of chemo brain,short term memory issues, and i am 60 years old. That is not old...but many people my age that aren't sick are having memory issues!! That's the norm! I say "why rock the boat"??

My radiology Dr. did say that while they say chemo does not treat the brain.. they are convinced to a point that chemo MUST get some what to the brain and that would explain "chemo brain".

Thank you for replying back to me. I love this site and the people that are on it are great!

bluerose's picture
bluerose
Posts: 1089
Joined: Jul 2009

Gotcha. Thanks for the further info, now I understand why they are thinking of the full brain radiation if the stats say that the brain is where they expec it next.

Wow, bad decision you have to make. Makes me think back to when they said, when my lymphoma came back the second time 'one treatment you can have is a bone marrow transplant but there is a chance you could die just from the treatment alone'. Hmmm, nice choice. It's a hard one to decide upon - death vs a chance at life. Hmm. I had no idea the side effects of the life part would be so severe, in my case I mean and remember EVERYONE IS DIFFERENT as to how they respond to treatments or to the initial cancers.

One thing that stood out is what your doctor said to you about chemo and the brain. I am not 100% sure I know what he meant but I do know - from a reputable neurosurgeon who deals with mind matters all the time in a Memory Clinic here at one of our hospitals - that some chemo drugs do cross what they call the blood-brain barrier and can cause changes - so far they don't think it's ALL chemo drugs but some of them. Radiation I am not sure of but I bet it affects the brain too but it depends on many factors I would think like amount of rads, location radiated yada yada. I am sure of what he said about some chemo drugs influencing the brain as far as damage so why not as far treating the brain - guess it depends on the drugs and their capacities as well as the issue at hand with the brain.

I don't think there is anyone who can tell you what to do here. I am a great believer though in going with your gut. I really am. For me and many other survivors it almost seems like after the first diagnosis and treatments we become even more in touch with our bodies and what they need and don't need. Tune in to yourself and whatever keeps coming up as to what you think you should do - do that. Of course get as much info as you can about similar situations with other survivors but remember that each person is different in how they will handle any treatments or any cancers. Listen to your gut.

Blessings,

Bluerose

MzzKimba2002
Posts: 10
Joined: Mar 2011

Sorry my reply posted twice. I tried to edit and delete one of them but didn't see a "delete" option. Sorry about that glitch!

Hondo's picture
Hondo
Posts: 5717
Joined: Apr 2009

Here is some infomation I found with other CSN survivors who had full brain radiation

Full
Brain Radiation

Hope this helps
Hondo

MzzKimba2002
Posts: 10
Joined: Mar 2011

Thank you so much Hondo for this information. My gut is telling me to listen to that old saying "if it's not broke..don't fix it'. I am leaning in that direction. I am 60 years old. I can't imagine after what i have already had to go through to think of messing with my brain! It is a crap shoot.. and i have never been a very good gambler. Thank you again for your help!

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