Headaches on Dacogen

[Jo L.]

Has anyone been experiencing headaches while on Dacogen? My husband has done five rounds of Dacogen and during the last two months, about 10 to 14 days after the last treatment – typically when he gets his biggest drop in blood count numbers, he also gets severe headaches. The awful, splitting I-wanna-cry kind. He didn’t get them back when he first started with the drug, when all of his counts were extremely low. It’s odd because the last two months his HGB has been in the 11’s, WBC above 2.0 generally and as high as 6.2 and platelets ranging from 115 to 230. He’s gone for MRI and MRA with nothing really showing up, so next step is a neurologist with a headache specialty. (?) I just wondered if anyone else was having the same problem and if any found a solution.

Jo

[Mary4Mike]

Jo,

My husband just finished his 4th round of Dacogen. He never experienced headaches, but after the second round, he had right shoulderblade pain that came on suddenly around the time of his nadir. When you say the awful, I wanna cry kind, I can truly relate. He said it was the worst pain he had ever experienced. NOTHING took the edge off the pain, not Vicadin, not Delaudin, not morphine, Flexerall, or Valium. They gave him so much stuff that the nurse and I kidded that WE would be in a coma if we took that much stuff. They x rayed and found nothing. He did go to a chiropractor after a couple of weeks and slowly it went away. The hemo said he must of had a pinched nerve. He would never say it had anything to do with the Dacogen or the Neulasta. After the third round, he developed severe pain in his right side (rib area). He also got pneumonia, but this was after the pain started and he never really coughed much with the pneumonia. He still has residual pain. He went to the chiropractor again last week. He will nadir sometime next week and I pray that there is no new onset of pain. His HGB today was 11.8, the highest it has been in years, so we know it has to be doing something to the bone marrow. It sounds like your husband is having similar results. I hate to think that the trade off is some sort of pain. How many days do the headaches last and has he found anything that gives him relief?

Keep us updated on what you find out and I will include him in my prayers.

[Jo L.]

Mary –
John’s headaches last about four days. What is odd is sometimes he’ll have a mostly good day and out of the blue one will hit like a flash out of nowhere. Originally they just suggested he take Tylenol, but after they got really bad, he tried Vicadin which didn’t help at all. Last week they gave him Oxycodone but it doesn’t completely take the pain away – it does take the edge off somewhat.

Hooray for HGB of 11.8 for your husband! I hope he keeps seeing improvement and starts feeling really great. If your winter was like ours here in Wisconsin it is time we get some good news for a change.

Jo

[Mary4Mike]

Jo,

Having a quick onset of a headache like that has got to be scary. Are the docs even considering that it is the Dacogen? Has your husband had to be hospitalized because of low counts due to the Dacogen? Mike has been in the hospital each cycle. Hopefully, we can make it through this nadir without hospitalization or any new pains. When is your husband due again for treatment?

Yes, we had a very cold winter here with LOTS of snow, however, we were able to get away to Florida for the month of March. Mike did get pneumonia though and had to be in the hospital down there.

Let us know what the specialists come up with about the headaches.

[Jo L.]

Mary
John just finished his sixth round of Dacogen today. He is on a one week on/three week off schedule. He has not needed to go to the hospital, though it came close after his first cycle. His numbers were awful, but they seem to be improving with every round. We feel very fortunate (lucky?) there have been no infections or other big challenges. Especially as I read through this forum and there are people struggling with so many different issues.

Our hemo has been researching and says he finds that headaches are being reported with Dacogen. John sees the neurologist next Friday. We’re keeping a log of as many events and variables that we can.

I hope more people that are on Dacogen will reply with the side effects they experienced. It makes it somehow less frightening to know that other people are getting ‘this’ or ‘that’ and it is not that we are doing something wrong or it is something to be really concerned about. (sorry for the run-on sentence)

Jo

[Jo L.]

The headaches continue – usually during the third week – the ‘nadir’ week. On the dr’s 1-10 scale, John rates them in the 8-9 level. The neurologist thinks it is blood pressure related. She has been having us track his BP at the onset of the headaches, during and as they subside. He has been having weird highs and lows in his BP. 198/105, 211/110 – but then he will drop down to 86/55 within a matter of an hour. Our regular GP ordered a blood test to check the adrenal gland function and found that it is somewhat high – 120% over the high end of the range. Don’t know if that indicates anything, but John will be going for a CT scan of his abdomen.

Our oncologist called the mfg of Dacogen and they do say headaches are one side effect – but in only about 15%. He doesn’t seem convinced they are caused by the Dacogen – but since the headaches usually occur during the third week, I can’t help but think it is related.

Oxycodone doesn’t help and the neurologist does not want to prescribe anything else. She’d rather find the cause and treat it instead. She said some of the meds she usually uses have the side effect of raising the BP, so that’s not a good idea. So we’re left with no help when a headache does hit – just suffer through it.

His response to the Dacogen has been very good, otherwise. He has been maintaining good numbers on all three lines – WBC 3.4, HGB 11.5 and PLT 186. He feels pretty good – even working out in the yard now that the weather’s getting better. Our oncologist says John’s response has been the best of any of his patients on Dacogen, so we continue – John started another round Monday. Now if we can only fix the headache problem.

Jo

[jaxem]

I wonder if the dacogen is causing the headaches or what the dacogen does which is drastically lowering counts. Has your husband been getting blood products all along the treatment cycles? what are his counts like during the nadir?

[Jo L.]

Jack –
John has only needed one red cell transfusion last December after his first round of Dacogen. Since then, his counts have been steadily going up, only dropping back some during the third week – I almost don’t want to use the word ‘nadir’ because it was only really bad the first two cycles. Back then, WBC 0.4, HGB 8.5, PLT 17 – now he is usually WBC over 3.0, HGB in high 11’s to mid 12’s and PLT over 150.

We’ve been happy overall with the results from Dacogen – he’s had more energy lately than he has had for the last year or so. If we could figure out the headache issue, life might almost be normal again. Maybe our regular doc will learn something after the CT scan to check out the adrenal gland. Sheesh, more things to learn about that I never thought about before!

Jo

[Jack_dup1]

I started using Endocet (percocet) when in the hospital in Jan. For me it has been a miracle drug. I will get very tired, get a lot of pain in spleen, liver area, get very bad leg aches. I will take 20mg of endocet, lay down for 20 minutes and get up feeling great. I have a pretty high tolerance to pain meds. It does not cure anything, but sure helps a great deal, if not for it I would be in bed a lot.

After my first Dacogen cycle I have had very few if any problems. My whites dropped from 24 to 1.6 in two weeks, plt 71 to 17, reds 15 to 11.5. I hope to see some improvement next week(3rd week).
Jack

[Jo L.]

Interesting note about John’s headaches – he had always gotten BAD headaches the third week of his Dacogen cycle. His last cycle was in November. He was diagnosed with trachea cancer in December, and our oncologist advised stopping Dacogen until after the Photodynamic Therapy. John has not had those ‘8/9 on 10 scale’ headaches since. Our doctor never thought the headaches were related to Dacogen, but we always knew they were.

Jo

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