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New Drug Update - Personal Experience

Shoopy
Posts: 210
Joined: Jul 2013

Howdy all!  If you remember from my last post my doctor started me on Revlimid (25mg) because he saw a slight uptick in cancer activity in two small areas.  I was ready for stem cell transplant however the doctor said they prefer the cancer to be decreasing in activity if not non-existant.  I've already had a ton of chemo (2 R-CHOP, 3 R-DHAC, 2 R-ICE) so he put me on the Revlimid that has been shown to be effective against my sub-type of DLBCL (which I think is 'non-germ centered'--but can't remember exactly).  This is an oral pill I take for 21 days with 7 days rest.  The doctor wants to do 2 cycles.  It does 3 things: fights the cancer directly, cuts off the blood supply to the cancer, and encourages the body to fight the cancer.

I just finished my first 21 day cycle.  The side effects for the first two weeks were pretty mild.  I had some middle back pain that was to be expected.  It would happen in the middle of the night (about 5 hours after I took the pill) and last about 1-2 hours.  Normally, popping an oxycodone solved the problem.  Things got a little strange from day 15-21.  I started having chest pain last week and the oxycodone wasn't making a dent (and the pain was odd--if I laid still; no problem--if I rolled to my side or stood up; pain for about a minute then gone).  This drug can cause blood clots so they had me come in Wednesday night for a CT scan (negative for clots).  EKG and blood work showed no cardiac issues.  I saw my oncologist the next morning and mentioned that several nodes in my chest had increased in size.  He reminded me that this drug commonly causes "tumor flares".  Basically, as the drug encourages your body to fight the cancer, all those white cells crowd into the lymph nodes (where the cancer is).  This causes them to increase in size...become uncomfortable...even hurt pretty bad.  Sure enough...that's what was happening to me.

As of today, there is just one node near the top of my neck that's a little sore.  The chest pain is gone.  The only other thing I noticed was that fatigue was pretty bad yesterday.  I think I fell asleep 4-5 times during the football games.

Oh...I also figured out that drinking two beverages a day containing caffine will cause 'the runs' with this drug.

Hope this helps someone else who might be taking this drug (this drug is normally used for patients with MM and MDS).

Karl

COBRA666's picture
COBRA666
Posts: 2418
Joined: May 2010

Karl,

 Thanks for the update. I have had no experience with that treatment since mine is Follicular. Sounds like it may be promising though. Keep us updated as to what is happening. Oh, I am going to write a prescription to avoid those soda pops. I will send the bill soon. Tongue Out Dr.John

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 1319
Joined: May 2012

Karl,

I'm delighted your Revlimid regimine seems to be doing the job for you.  Fatigue is almost universal in chemo, as you no doubt know. I slept at least 17 hours per day on r-abvd, but it has no steroid (Prednisone) to keep the patient bouncing off the walls.

A buddy died recently from prostate, which he fought for 13 years.  He went on Jevtana (a relatively new prostate drug) which knocked his PSA way down for a long time, but he got severe diarrhea for many weeks, so I guess that is sometimes a chemo effect as well. His was so bad a morphine-based anti-diarrhea meds did not even slow it down.  The water loss form this is somthing that has to be addressed promptly.

Bless your results,

max

Rocquie's picture
Rocquie
Posts: 565
Joined: Mar 2013

I am always happy to hear from you and get an update. It sounds like the Revlimid is doing what it is supposed to do, even if not very comfortably. And you have made it through the first cycle. I suppose after your second set of 21, you will have another PET scan? And then, finally, finally, be ready for your transplant.

Hang in there, rest and sleep when you need to, and I guess you may have to lay off the coffee for a while. Have you tried green tea? It only has a teensie bit of caffeine and is very soothing.

I think of you often and I still remember you in my prayers.

(((Hugs)))

Rocquie

 

jimwins's picture
jimwins
Posts: 2105
Joined: Aug 2011

Thanks for the update and it does sound like this drug is working for you - I'm glad.  Hang in there and know we're cheering for you!

Jim

Shoopy
Posts: 210
Joined: Jul 2013

Thank you one and all!  At first I was worried that sharing the diarrhea information was too much information...but then I thought about my audience (Dr. John Laughing) and knew it was OK.  I thought it was odd that the drug listed both diarrhea and constipation as possible side effects.  Seemed a little too "dissociative identity disorder" to me.  When I cut caffine out of my diet completely guess what happened...yep!  So now I'm learning that one coffee in the morning (I take the drug around 8:30pm) is a nice balance (so to speak).  I do drink green tea from time to time...and will continue to do so.

The fatigue part is very interesting for me.  I experienced fatigue during the chemo cycles but mainly when my red/hemoglobin count was low.  My current hemoglobin count is just below the minimum normal value but the fatigue is much worse this time.  I don't think I experienced true fatigue (the way you guys talk about it) until now.  Luckily, I have my son's basketball games to attend and other family stuff to do that keep me busy.

The plan is to take one more 21-day cycle of Revlimid then rescan (CT & PET).  That should happen the week of Feb 10th.  Assuming there is decreased activity (or no activity), then it's into transplant.  I'll let the onocolgist and BMT doctor fight over the timing but it won't be later than Feb 21st.

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 1319
Joined: May 2012

Karl,

It is ironic how any given drug can have either of two diametrically opposed side effects, but that is fairly common. Miost anti-depressants, for instance, have as a side-effect "possible increased depression and suicidal thoughts."  Go figure.

I never linked my fatigue to my blood counts, since it was constant and severe, regardless of lab results.  I marvel when I read accounts by people who are on heavy chemo and continue to work full time.  Chemo put me on my BACK, and there was no alternative. Most of the people I saw at my infusion clinic were the same: Barely able to stay awake. 

We are all waiting for your SCT to happen !

max

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