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Sangye
02-21-2012, 02:58 AM
This is from a JHU email newsletter I got today. I don't see why it wouldn't apply to lower doses of chemo, too.

Most cancer patients who undergo chemotherapy mentally prepare themselves for the side effects of chemotherapy: fatigue, nausea, mouth sores and hair loss. However, many are not ready for problems in concentration and memory -- the forgetfulness, confusion and disorientation that affect some people undergoing chemotherapy treatment. This condition has been dubbed "chemobrain" or "chemofog."

Chemobrain is an important issue for cancer patients because cognitive problems can have a negative impact on their ability to work or complete everyday tasks, and memory issues have a negative effect on quality of life in general. While cancer survivors have talked about these cognition problems for years in their support groups, the medical field had not given it much credence -- until recently, that is.

Research carried out over the past few years has involved cognitive testing, laboratory studies and brain imaging of patients undergoing chemotherapy. In a study in the journal Cancer, researchers from the National Cancer Center Hospital East in Chiba, Japan, noted that the shrinking of brain structures due to chemotherapy might be a cause of the memory complaints.

If you are a cancer patient and you have memory complaints, don't immediately suspect your chemotherapy. There could be other causes at work. Underlying medical issues, such as anemia or hypothyroidism, can cause cognitive deficits, and so can depression and poor sleep, with its accompanying daytime fatigue. Certain medications can also cause cognition problems.

If you are undergoing any type of cancer treatment or have just finished up your chemotherapy sessions, be sure to tell your doctor any problems you've observed with your memory or your ability to concentrate.

Although we still don't know definitively what causes cancer-associated cognitive changes and whether these changes will be temporary or permanent, one way to limit any mental confusion you may be experiencing is to stick to a routine, with written schedules and reminders to track appointments, activities and important dates. Using Post-It notes and placing them around the home and workplace is also a great way to create daily visuals to keep you focused.

pberggren1
02-21-2012, 07:42 AM
Very interesting. Thanks Sangye. I have been quite foggy at times the past few weeks.

Al
02-21-2012, 11:36 AM
This is good stuff, Sangye.

The one thing that raised a flag is the final note: "...one way to limit any mental confusion you may be experiencing is to stick to a routine, with written schedules and reminders to track appointments, activities and important dates. Using Post-It notes and placing them around the home and workplace is also a great way to create daily visuals to keep you focused." While this may indeed may be a good way to "keep you focused", I have to say that is does nothing for promoting cognitive health. That comes from novel experiences--doing something new every day, facing unpredictable situations and dealing with them. If you can't get out and explore new roads, at least solve puzzles, write letters, meet new people or start new conversations with old friends, learn a new language sort of thing. We can't help the brain fog that is part and parcel of the evil drugs, but we can do a pretty decent work-around.

Al

Chris G
02-24-2012, 02:09 AM
These cognitive symptoms are the exact reason I told my doctors I wanted to stop taking mtx. I practically demanded it. I was in such a fog every day that I could not complete simple tasks. About 2 weeks after stopping mtx, I was sitting @ my desk @ work and I almost said outloud "omg I feel so alert!" Obviously the lower doses we take won't affect everyone the same way. But mtx caused bad chemo brain for me.

HopeinTN
02-24-2012, 05:40 AM
I'm sure the Cytoxan is causing my brain fog. In additon to me locking myself in the bathroom while replacing a door knob, leaving the car in the garage for the night...still running...just to mention a couple, I leave myself post-its everywhere. Just yesterday I left one on my purse so I wouldn't forget that my dog was at the Vets. Good Times!

Al
02-24-2012, 06:43 AM
I'm sure the Cytoxan is causing my brain fog. In additon to me locking myself in the bathroom while replacing a door knob, leaving the car in the garage for the night...still running...just to mention a couple, I leave myself post-its everywhere. Just yesterday I left one on my purse so I wouldn't forget that my dog was at the Vets. Good Times!
Right, Katrina. You need that pup around to remember those things you forget, and bail you out of the trouble you get yourself into!

Al

HopeinTN
02-24-2012, 06:51 AM
Yes, he keeps me straight for sure! I've started forgetting if I have fed him or not. I need to create a sign to remind me. If can't ask him as he always thinks it's time to eat.

drz
02-24-2012, 11:02 AM
I'm sure the Cytoxan is causing my brain fog. In additon to me locking myself in the bathroom while replacing a door knob, leaving the car in the garage for the night...still running...just to mention a couple, I leave myself post-its everywhere. Just yesterday I left one on my purse so I wouldn't forget that my dog was at the Vets. Good Times!

Are you on prednisone?

My neuropsychologist told me that my concentration problems (short term memory like forgetting an appointment or that you left dog outside and poor typing and proofreading skills) are from the prednisone I take. It was a surprise to him and me and my wife that my other cognitive functions had actually improved from a year prior to my Weg diagnosis and one year after gaining a drug induced remission. During my initial treatment for Wegs I had CTX, RTX, very low hemoglobin from anemia and bleeding, and was intubated in a drug induced coma for a couple weeks, plus numerous hypoglycemic episodes over many years from diabetes; all of which usually lower cognitive skills. So most of my lower cognitive skills must come from my diabetes and hypoglycemic (low blood glucose episodes--for Phil) since the Weg treatment didn't seem to result in any further decline. But I still forgot to attend the concert tonight even though I bought my ticket two days ago and wrote several notes to remind myself but put them away when cleaning lady came and forgot to take them out again. Darn pred meds!

HopeinTN
02-24-2012, 02:44 PM
I'm on prednisone, cytoxan and bactrim, as well as knocking on the door to 40. I'm sure there are several contributing factors to my plight.

Sangye
02-24-2012, 03:15 PM
Prednisone and ctx are the most likely culprits. High-dose pred is famous for messing up short-term memory and cognition. I was definitely more muddled while on it. Hormonal changes due to pred and ctx can cause cognitive problems. And if ctx is putting you into an early menopause, you've got those hormone changes as contributors as well. Fatigue is a major factor in cognition problems, too.

Unless you are seriously malnourished, I doubt that age itself is a factor in your case.

Al
02-24-2012, 03:43 PM
....Fatigue is a major factor in cognition problems, too. Unless you are seriously malnourished, I doubt that age itself is a factor in your case.

Katrina, If your age is contributory, I am in truly sorry shape, being considerably older than you. Gee, i hope I can hang on a little longer....

As for fatigue, I believe it is a major problem with cognition. Pred can contribute in this way: You may feel like you can solve all the problems of the world while you are going full speed on a high dose. But coming down form it can be really tough. For me, mornings have always been tough. I just have never been able to bring my IQ up to fighting strength south of noon. But on high-does pred, I could write a chapter or two before breakfast, though I would pa for it later in the day. Now, it is back to the normal state.

Al

HopeinTN
02-25-2012, 01:41 AM
Al, that is exactly how I felt on 30 mg. If it didn't have such horrible side effects, I may have been hooked. The good feeling of being able to take on anything, and I did, doesn't outweigh the bad. My house did get a pretty good make-over. It was a real euphoric feeling.

I noticed fatigue a lot more after the 10mg reduction, rather than the smaller doses.

Happy Friday all!

HopeinTN
02-25-2012, 01:49 AM
Sangye-

That makes total sense. In addition I'm experiencing a light-headed and dizzy feeling. My Dr. says it mostly related to the hormone issues as you mentioned. I know I'm not old and I have a lot of good years ahead, but all these issues are making the turning 40 thing harder than I ever imagined. Especially the fact that teh treatment could keep me from having any children of my own. I'm totally ok with adoption, but it still weighs on me. I just had a different plan for me, but my plan isn't the one that's important. I'm slowly adjustign to that.

Malnourished? Ha, no chance with teh weight gain from the pred. I need to get my behind on a diet that is treatment approved and friendly.

Thanks so much!

delorisdoe
02-25-2012, 02:21 AM
Prednisone and ctx are the most likely culprits. High-dose pred is famous for messing up short-term memory and cognition. I was definitely more muddled while on it. Hormonal changes due to pred and ctx can cause cognitive problems. And if ctx is putting you into an early menopause, you've got those hormone changes as contributors as well. Fatigue is a major factor in cognition problems, too.

Unless you are seriously malnourished, I doubt that age itself is a factor in your case.

I have friends etc that are jealous of my early menopause...if they only knew all that that meant for a 28 year old female. Makes me feel so alone.

HopeinTN
02-25-2012, 02:33 AM
I can relate but I know we aren't alone even though it feels that way. I wish I hadn't kept putting off having children, but everything happens for a reason. That I'm sure of. Not that I know the reason though. The key for me is always finding something good in the bad. It's not always easy but it's always worth it.

delorisdoe
02-25-2012, 03:10 AM
so i have been told

Trudy
02-25-2012, 03:34 AM
Prednisone and ctx are the most likely culprits. High-dose pred is famous for messing up short-term memory and cognition. I was definitely more muddled while on it. Hormonal changes due to pred and ctx can cause cognitive problems. And if ctx is putting you into an early menopause, you've got those hormone changes as contributors as well. Fatigue is a major factor in cognition problems, too.

Unless you are seriously malnourished, I doubt that age itself is a factor in your case.

Sangye, Everyone refers to high dose prednisone.....what mg is actually considered high? I know ideally none is best, but is there a safe maintenance mg? I've been on a 3 year roller coaster and never gotten below 10 mg. Right now I working down from 60 mg (4 weeks ago flare) and today I'll take 30 decreasing 5 mg every 5 days. I tried decreasing faster and put myself right back where I started. I know this is different for each of us, but any advice would be welcome right now.

delorisdoe
02-25-2012, 05:37 AM
Sangye-

That makes total sense. In addition I'm experiencing a light-headed and dizzy feeling. My Dr. says it mostly related to the hormone issues as you mentioned. I know I'm not old and I have a lot of good years ahead, but all these issues are making the turning 40 thing harder than I ever imagined. Especially the fact that teh treatment could keep me from having any children of my own. I'm totally ok with adoption, but it still weighs on me. I just had a different plan for me, but my plan isn't the one that's important. I'm slowly adjustign to that.

Malnourished? Ha, no chance with teh weight gain from the pred. I need to get my behind on a diet that is treatment approved and friendly.

Thanks so much!

Hope, have you gone through menopause then? I have been in search of another woman who has at the same age I did? Is that you?

HopeinTN
02-25-2012, 07:48 AM
We don't know for sure yet, but it's looking that way. It's a bummer, but I can think of far worse things to deal with. I will be 40 on April 2nd and I guess waited too long to have children of my own, but I didn't plan on Wegs or Cytoxan.

Lightwarrior
02-25-2012, 10:19 AM
These cognitive symptoms are the exact reason I told my doctors I wanted to stop taking mtx. I practically demanded it. I was in such a fog every day that I could not complete simple tasks. About 2 weeks after stopping mtx, I was sitting @ my desk @ work and I almost said outloud "omg I feel so alert!" Obviously the lower doses we take won't affect everyone the same way. But mtx caused bad chemo brain for me.

I was going to comment with something very profound but I forgot it, okay, gotta go take my MTX (LOL)

Lightwarrior
02-25-2012, 10:25 AM
HopeinTN, I LOVE your Avatar and your Bombeck quote :hug3:

vdub
02-25-2012, 11:42 AM
I forget everything. Not sure if it is drug-induced or just getting old. I used to be pretty sharp and could juggle a couple dozen variables in my mind as I was writing computer programs. I could never do that now.

I rely heavily on the calendar in my computer (which is on most all the time). I put in every little thing possible, because I know I'll forget it. I have to put reminders in immediately, since, if I don't, I will forget within 5 minutes....

Chris G
02-25-2012, 12:18 PM
When I was taking mtx I tried not to interact with people at work because I knew my words weren't coming out correctly. I was also forgetting that I'd had conversations with people. It was really embarrassing. And I was terrified all the time that id make a mistake at work and screw something up.

I did come clean and tell ll my boss that I was having trouble with one of my meds. I didn't want him to think I was drunk or something.

Sangye
02-25-2012, 02:29 PM
Sangye-

That makes total sense. In addition I'm experiencing a light-headed and dizzy feeling. My Dr. says it mostly related to the hormone issues as you mentioned. I know I'm not old and I have a lot of good years ahead, but all these issues are making the turning 40 thing harder than I ever imagined. Especially the fact that teh treatment could keep me from having any children of my own. I'm totally ok with adoption, but it still weighs on me. I just had a different plan for me, but my plan isn't the one that's important. I'm slowly adjustign to that.

Malnourished? Ha, no chance with teh weight gain from the pred. I need to get my behind on a diet that is treatment approved and friendly.

Thanks so much!
Lightheadedness may be due to the pred. Pred causes anxiety (anywhere from a little to a lot!), which is often the cause of lightheadedness. I'm assuming your blood pressure is okay. Pred can raise it and that can cause those symptoms too.

I was dx'ed when I was 41, and was extremely strong and fit. I had actually been looking forward to my 40's. I'm really sorry that you have to worry about infertility. I can't imagine how difficult that is. Ctx put me into menopause within 3 months. Being a nun it wasn't an issue that I can never have kids.

And hey, you can still be very malnourished even if you're very overweight. Living on junk food, etc... can easily do that.

mishb
02-25-2012, 03:17 PM
Hope, have you gone through menopause then? I have been in search of another woman who has at the same age I did? Is that you?

Leigh, I was 24 when mine just stopped for no particular reason. It was after the birth of my first daughter. A very strange experience and as you said, nothing any of my friends could relate too.
I was not on any medication, no illnesses, no reasons.......... they just stopped.

Lasted for 3 and a half years and during that time I was on hormone replacement medication and then I fell pregnant with my second daughter and everything went back to normal after that and has been ever since ....... worse luck.

I will be 47 shortly and would give anything to be free of them again........not long now I guess

mishb
02-25-2012, 03:30 PM
And now on to brain foggyness

Wow, I am so glad that there is a reason and that I'm not going crazy.

I used to know all the names of the television characters of shows that I watched and now their names escape me, and ends up difficult when we are trying to have tv talk at work.

The same with people I went to school with. My sister used to say, Michelle you are so good with their names - I can put names to faces even after 30 years. Not quite sure about that now.

And my typing....... I was tested once at a typing rate of 127 words per minute with about 99% accuracy. Now I reckon I still could type over 100 wpm if I tried but the accuracy has gone down hill, about 50% and I am continually back spacing to delete incorrect words. My head is telling me what words to type but the fingers just don't produce the same words.
I then proof read prior to hitting the send button and still miss some of the mistakes.

Gotta love that pred :unsure:

delorisdoe
02-25-2012, 10:12 PM
Leigh, I was 24 when mine just stopped for no particular reason. It was after the birth of my first daughter. A very strange experience and as you said, nothing any of my friends could relate too.
I was not on any medication, no illnesses, no reasons.......... they just stopped.

Lasted for 3 and a half years and during that time I was on hormone replacement medication and then I fell pregnant with my second daughter and everything went back to normal after that and has been ever since ....... worse luck.

I will be 47 shortly and would give anything to be free of them again........not long now I guess

I will admit I dont miss that part. I do have a daughter so the infertility was insulting but not heartbreaking. It is all the other issues involved with menopause that have changed my life in ways I am not to fond of. I am 40 now-almost I turn 40 on the last day of the mayan calander-but I was 28 when this hapened.

Sangye
02-26-2012, 01:40 AM
Oh jeez, I was dx'ed when I was 42, not 41. Well, that just helps make my point. LOL :biggrin1:

Jaha
02-27-2012, 11:47 PM
I have been bouncing back and forth from 60mg of preds since 2010, made it to 15mgs last spring and had to be upped to 40mgs and then got down to 10mgs, in Oct and had another flare. So we went back up to 30mgs and am still there. I can sometimes make full sentences or have a complete thought, but it is a challenge. As for infertility I have no children due to the fact that I had endometrosis and had a hysterectomy at 34, when finally at 49 I got my ovaries removed, I thought that I would have a whole new life. That joke was on me, Dxed with Weg's at 52! Not having children is heartbreaking, my husband and I tried everything,ferility drugs, operations and any other method for nine years, finally we realized that it was not to be. Thank goodness I lots of nieces and nephews inwhich I had the pleasure of spending lots of time with as they were growing up. Now they are all having their own children, if I could just remember their names,HA,HA!:confused1:

HopeinTN
02-28-2012, 08:19 AM
Thanks LightWarrior. I feel the need to remind myself of positive thinking. Whatever it takes right? I just started my treatment in October and the signs of early menopause started around January. Still not sure if that's it but they say they are 75% sure it is. I was told I could wait for treatment but after my docs discussed it amongst several people at a teaching seminar at Vandy, they all felt the treatment shoudl start ASAP. My health is far more important than my wishes on this one. It's not the end of the world, but yes, a tad bit heartbreaking at the same time.

Sangye- I used to have very normal BP but yes, lately I feel it being elevated and a flushed face. The light-headed feeling is normally associated with standing up. Good to know it's pretty normal. Thanks for your words of wisdom as always.

To all of us that have to go thru this and other problems with treatment...here's a big hug to you!

I hope everyone has a great week!

Sangye
03-01-2012, 04:40 AM
Do you actually know if your bp is elevated? The sensation of light-headedness when you stand is due to adrenal weakness (caused by pred). The adrenals help to stabilize the bp when you change positions. If they're weakened it takes a few seconds for them to catch up. There isn't much you can do about it, so just make sure you stand up slowly and have something to hold onto. If you get up too quickly you could black out.

KathyB
03-04-2012, 03:34 AM
I fit in this category (and thread!). I don't think I realized the lightheadedness was due to Pred. My BP is regulated with meds and greatly improved. Still on 7.5 mg of Pred daily. Pulse still higher than usual, but I'm out of shape. My memory (and recall time) is awful. I'm used to having facts on the tip of my tongue. I forget faces and names, too. I'll give some of it up to old age!!