Thalidomide and Dexamethasone/neuropathy

Multiple Myeloma
#1

My Dad is starting Thalidomide and Dexamethasone soon. Just wondering for those of you who have been treated w/ this. Did you experience the neuropathy that often comes with it? Did it happen right away? My Dad is an athlete. He enjoys biking, skiing, and running. From the little that I have read, I’m concerned he may not be able to keep up w/ these sports.

just wanting to here your experiences good and bad, to know what we’re up against. Thanks.

also do they generally do a blood thinner w/ this? as I’ve read it can cause blood clots.

#2

HI,
My mom just finished her course of the dex and Thalidomide. It has done a wonderful job of keeping the bad protein down and now she is taking the Thalidomide by itself and still doing great. She has not suffered the neuropathy that we were warned about, but she does have an itchy rash that we attribute to the Thalidomide. Her doctor however, wants her to continue the Thalidomide anyway since it has been so effective.
While she was on both drugs she did have problems with an increase in appetite and a lot of gas. When she discontinued the steroid the gas continued for about a week. It was quite painful! She was also too warm all the time. She also takes Coumadin, one a day, to prevent blood clots.

Good luck with your dad’s therapy. We wish you all the best.

God Bless,

Lisa

#3

Yes, did experience some neuropathy. But it did not begin right away. After several rounds of chemo on the VAD regime I had just a tingling sensation in my hands and a little stiffmess too. With the second go round with chemo a year later I also experienced this in my feet. It did not keep me from moving, but I was not as active for a couple of reasons. One is excessive tiredness and the other was many activities put me in contact with people who might not feel well. I was never on any blood thinners.

P-Putt

#4

so my Dad has taken this for a week maybe? and now he’s struggling w/ being dizzy and sleepy and having a hard time making it to work. By the time he wakes up mid-afternoon he has a few good hours before he has to take the pill again and an hour and a half later he’s “knocked out” and ready for bed.

any suggestions about what to do w/ the sleepyness and trying to lead an active life!? Is there anything the doctor can prescribe to help w/ this side effect?

#5

Hi,
I don’t know what his dose is, but my mom took her dex in the morning and then two thalidomide before bed. This helped her a lot with the drowsiness. The dex has some nasty side effects on its own, but I don’t think mom had trouble with being sleepy. She is now off the dex, but still takes the thalidomide at night. You might check with your dad’s doctor and see if he can take both thalidomide at night in one dose. Good luck! It is worth it. So far, mom is doing really well. Her protein tests have been in normal range for about five months now.

God Bless,

Lisa

#6

DLG-

Yes, thal/dex may cause pn and a blood clot. Many mm specialists are prescribing lower doses of thal/dex- the standard thal dose was 200mg a day, now the standar is 50mg a day. 40 mg of Dex every for days rather than 40 each day. The dose directly relates to the probability of pn and a clot.

For more discussion on lower thal/dex dosing go to beating-myeloma.org- join the listserb/forum.

To reduce the risk of a clot, consider fish oil, broad spectrum enzymes, nattokinase, vit. e (400 mg x day)- research this on the internet-

As for Dad enjoying sports, great! His athletic activities will help to stave of the pn. Also, studies indicate that antioxidants may protect from pn. Also, Dana Farber web site has links to their own list of supplementation to protect against pn. Ken Anderson leads the mm group and is a mm expert.

Beating-myeloma.org list and list archives discuss lower dose of thal.dex, chemoprotective effect of antioxidants and blood clot prevention. David Emerson

#7

I just talked to Dad, he’s on 200 mg of Thal once a day… and 20 mg once a week of Dex. I urged him to talk to his doctor about lowering the dose so he could function, I read that if you start lower and work up you have a better chance at adjusting then just starting at 200. Anyways. his doctor lowered the dose today to 100mg, but made some comment about how he thought he was “strong enough to handle it!” b/c he’s an athlete. come on now! what kind of comment is that to someone who’s hurting already.

Dad is planning to speak to someone at Dana Farber sometime in the next year I believe. He’s already been to the Mayo, and he wants to go to Florida for something?

Shouldn’t the doctors be knowledgeable about this stuff enough to tell you that you may have to take off work for a bit while your on the meds, instead of giving no warnings.

sorry for the randomness. I have so much going thru my head right now!

thanks for the info on the website and blood clot prevention. Great website by the way, I hadn’t found that one yet.

#8

DLG-

I’ve attached an article regarding low dose thal/dex (I think). It sounds
as if you are on it.

While I am sure that your dad can “handle it” it is not a matter of his
physical condition but lowering the possibility of pn- I have a great deal
of nerve damage0 I can barely walk. Though I was in terrific shape when I
was began therapy at 35.

20 mg of dex once a week sounds good. Some oncs report that 50 mg of thal
works better than more- read the study and give it to your dad- you decide.
It is your choice not the oncs.

Re taking time off work- some people handle initial therapies like low dose
thal/dex well. Some want to continue to work- it makes them feel better to
have something to do.

Personally, I think that any/all stress should be eliminated. But I think
differently than oncs.

Thanks about the site. B-m.org, acor, mma, cancer consultants, cancer care,
there are now a bunch of interactive health communication sites out there.

The important thing is that studies clearly show that all of us
communicating (interactive health communication) leads to better, longer
lives.

I’ve included a paper on this issue as well. Hang in there.

David

#9

daviddecemerson

I just saw your reply. I never got a note in my box that you had written. sorry about the delay in response. Anyways thanks so much for your info, but I can’t find an attachment, maybe I’m not looking in the right place? I’m worried about the high dose, Dad’s foot and lip are getting numb already. :frowning: He trusts his doctors call and feels uncomfortable telling him what he’d rather do, but I tend to go the way of research like crazy, and ask the doctor questions like crazy and make sure they are doing the best thing for you! and who cares if you step on their feet a bit! thanks for bringing this to my attention. He’s on 100mg now, (thanks to everyone bringing this up to me YOU MADE A DIFFERENCE!) but he is still feeling awful! I’m not sure what to do now. Do you think they have him on such a high dose b/c he has 90% in his bone marrow? He also has a VERY odd twist of MM, they think he has Waldenstoms as well. Or a funky twist of the two diseases together somehow.

#10

PS Davidemerson…
just ran across your name somewhere else while researching all this stuff. WOW…small world! I used to nanny where you live! (if you still live there). I’ve since moved but my father is practically neighbors w/ you!

#11

DLG-

I live in Chagrin Falls, Ohio- There is a business called the
Nanny/Governess School in the village-

I don’t know where you read my name but I’ve been at this for awhile now-
compared to most mmers, I’ve alive for longer than most.

How would your dad feel about having a cup of coffee at the local starbucks?
It’s right next to the falls. We survivors enjoy talking to each other.

David

#12

DLG-

I will try to attach the low dose article again. Challenging one’s onc is
still relatively new. It’s a bit of a generational issue as well. Our
parents do not feel comfortable questioning the dr.

What is important about lower dosing for thal/dex is that it may be MORE
effective than higher dose. More effective with less risk of side effects.

Also, there have been studies that indicate the chemoprotective effects of
antioxidant supplementation. That this supplementation will help potentiate
the conventional chemotherapy.

This is very controversial however and your dad and his onc are not likely
to pursue it. It you like to research, there are several articles
discussing the benefits of antioxidant therapy in the beating-myeloma.org
listserv/forum archives- members of the list are very interested in info
like this. This info is also included in the MMA listserv archives. If you
went on to either list and asked the question, I think someone might offer
the studies to you.

Please tell your dad that mm is an obscure sort of cancer with more and more
info showing up out there. If his onc is good, he/she will be open to
ideas, suggestions, etc. Especially if these ideas are backed up by
studies. If the onc gets annoyed, I would question the strength of the onc.

David

#13

hi, I spoke w/ my Dad, I think he would be interested in meeting you. I had read your story on the beating-myeloma… website. Can he look you up in the phone book? or how do you want to go about doing this? Starbucks is great. Also I didn’t want my Dad knowing the site name here at Careplace b/c this is my personal place to ask questions, I was encouraging him to get online and ask questions in another forum. I don’t want him to see how I’ve worried. :frowning: might make him feel worse. If you KWIM? I’m excited for a possible visit! I believe your experience might be able to help him in his.

I used the nanny service off of Chagrin road, not the one IN Chagrin Falls. I LOVED my job and miss it! But getting married took priority! :)and I had to leave the kiddos behind. I’ve since moved from the area. Maybe we could all meet this weekend? I was talking about coming up that way to help my mom around the house.

#14

DLG-

Your dad can look me up in the book, or call me at 440-247-6958 or I can
call him-

We can meet when its convenient for you.

You dad may enjoy the forum/listserv at beating-myeloma.org. Pretty nice
group of mmers. Its free, lots of experience, etc. We can discuss this if
we meet.

Let me know. Thanks

David

#15

FYI
not sure if my Dad called yet or not, I didn’t want to leave you hanging, he said something about after Thanksgiving and not this weekend.

#16

No problem take your time-