Dacogen and back pain

[Mary4Mike]

I would appreciate hearing from anyone that is presently taking Dacogen or has in the past. My husband finished his 2nd round Jan 11. Yesterday, he began experiencing pain between his should blades that kept getting worse. We tried Ibuprophen, ice, heat, aspercreme, nothing helped. This morning I spoke with the nurse at his doctor’s office and she looked up Dacogen in their PDR. It listed as side effects: back pain 17%, myalgia 5%, and muscularskeletal (sp) pain. He experienced back pain during his last cycle also, but nowhere near as severe. Because this was at the same point of the cycle as last time, we have to believe that it is Dacogen related. They called in a Rx for Vicodin and it is beginning to take the edge off.

Has anyone else experienced this? The idea that it is going to be worse with every cycle is a bit depressing….perhaps treating it prophylacticly will be the answer.

Any input would be greatly appreciated.

[LuAnn]

Hi Mary,
My dad also had 2 cycles of Dacogen and he experienced ear pain about 2 to 3 weeks after the shots. At first his oncologist said it was not related however another oncologist said it could be the Dacogen working. Since it builds the bone marrow she thinks it may be the result of the Dacogen working. There is no proof however but it seems logical. Did your husband have to go to the hospital as a result of the Dacogen? My dad had to go after each cycle, approx. 2 weeks later. Very high fever, fatigue, weakness, and no wbc or platelets. The first time he was in the hospital for over 2 weeks. The second time for 1 week. He developed c-diff and now has to wait for a negative specimen before they resume the Dacogen. Last time he was in the hospital they took a check x-ray and it showed ‘something’ but it was not clear. We just got CT scan results today and there is something there, or something going on as the dr. said, but he doesn’t know what. He has to go for a PET scan. Have you heard about any affect on the lungs? I hope it’s not serious where they have to stop the Dacogen cause once dad is recovered from the hospital stay he is happy, stronger and xfusions are less frequent. How is your husband responding to Dacogen re: blood levels? I hope they can pre-treat him for back pain before next cycle. Good luck.

[Mary4Mike]

Hi Luann,
Yes, Mike had to be admitted to the hospital about 2 weeks after the shots. He had fevers (as high as 104), severe chills(riggor-like), night sweats, but no infections. Chest x ray was also clear. He was released after 3 days when the fever broke. His counts bottomed out at this time also. After coming home, his counts came back around better than before, however he still had night sweats for another week. He just finished his second round and has not hit his nadir yet….most likely next Thursday. He is on a 5 week cycle, but I am reading on the Dacogen site that they recommend 6 weeks and the dose can be lowered if the patient isn’t rebounding that fast. I did not see anything on the site about lung problems or ear pain. The theory that pain is proof that the Dacogen is working is encouraging, but I hope it subsides with each cycle.

Another interesting thing I read on the Neulasta site is that a side effect can be shoulder pain. We will need to discuss this with the doc.

Hopefully, your dad will get straightened out so that he can resume his Dacogen treatments. It sounds as if it will help him. Please keep us up to date on his progress.

Best wishes,

[Dick]

Hi gang

Been reading your reports on Dacogen with a great deal of intrest. Just finished by second cycle. Lots of fatigue . . . and now a cough . . . deep cough. Any reactions from you?

Dick

[eve]

dick

please if you have ANY type of a cough please check it out asap with a doctor

eve

[gj]

Hey everyone!

I’ve been around Dacogen for a while now and usually manage to develop side effect #13 out of 10.

Mary
That back and bone pain seems to be strongest during the low point — nadir — after treatment. I’ve noticed a lessening of bone pain as treatment moved on. Altho each of us react differently, it seems to have gotten less the further along treatment progesses. My onco said once you get 4 rounds in that is when dacogen really kicks in. He also said the first 4 rounds should be in the 4-5 week cycle and less aggressive after that. My last 2 treatments were on lower doses because my counts were lower than usual.

LuAn
I ended up in the hospital with an unspecified infection three times after treatment with Dacogen. Had a fever which responded to antibiotics. Since then I’ve managed to avoid the high fever — came close a few times but haven’t been in the hospital since.
With my lower counts I have devleoped shortness of breath and the onco is beginning to check into a reason for that, since my blood doesn’t seem to indicate aenemia.

Hope these few thoughts help.
gj

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