Neulasta

[Russ]

Just been going through the worst misery in a long time. All due to Neulasta. On my 1st rnd of Dacogen, I refused the Neulasta because of a previous bad experience and I was seeing the Hemo/Onc in a couple of days. This time I took it as it would be a weel before another CBC. The bone pain was bad for 2 days but I got through it. Now I’ve had nausea and no pep. Thought my HGB dropped because of trouble breathing so went in for a CBC this am. My HGB was 9.7 (good for me) and PLTs at 148 – great. My WBCs had jumped from about 5 (when I started Dacogen) to over 50 4 days after getting Neulasta. I feel like I must be super sensitive to the stuff and apologise for being a wimp. Anyone else with this experience?

[Jerry]

Russ …

I take Neulasta (but not Dacogen) and have about 24 to 36 hours afterward when I don’t feel so hot … some bone pain and general malaise but my WBC’s shoot up like your did … then over the 3 weeks until my next shot, it slowly comes back down. I actually have that shot and my Aranesp tonight so that by Thursday I will feel better and can go on a short weekend trip to Florida with Debbie. Hope this helps a bit. Good luck!

Jerry

[Dottieb]

Russ, John finished his cycle on the 16th and except for a couple of days, he hasn’t felt to spry. Dr. tx on the 21st and we decided to take a week end of doing nothing!!!! Mon. we went in as we figured his counts would dive and dive they did. Plts. were 9 and wbc was 1.2 hgb was 5.7. Had a unit of plts. and 1 blood finishing today with 1 more. As I look back at his cycles, he seems to hit bottom around the 8th or 9th day. I look forward to some good news. Thur. we go in for another cbc. He is on neupogen. Maybe that makes him feel so lousy. Just a thought. Of course with his numbers right now, I guess he has a right to feel sluggish. Best Dottie

[Carl]

Russ,

Have you tried Neupogen? Same as Neulasta except you take it more often. (Daily instead of once every two weeks). I do the injections at home instead of going to the clinic.

That might help your bone pain. Ask the Doc.

[Russ]

Many thanks for the replies. Today is much better (5 days after Neulasta) Woke up with a lot of bone pain last night (the 1st real bad pain since last Saturday). This morning was not as lethargic as before so feel I’m on the mend.
I called the toll free number for Neulasta and talked with a medical pro. They have not done any studies with MDS patients – only for those on chemo for solid tumors. He indicated the high WBCs would cause the Neulasta to throttle back but might take 8 or 9 days to get it out of your system. Asked him about sleen problems and he indicated the number of cases were about 1 in 10,000. A problem could be indicated by upper left abdomen pain or a pain in the left shoulder. I will ask Dr. about Neupogen but I am more inclined to consider a prophylactic dose of antibiotic for low WBCs.

[Frankie]

Hi Russ…
I’ve had Neulasta and the accompanying bone pain…ouch.
I’m happy that my oncologist/hematologist gives me groovy pain meds.
He reminded the pain is good…it shows that I’m “making my own blood.”
I’ve also had the horrible shoulder pain as well as the enlarged spleen pain. Somehow they are connected. I thought I had another attack of shoulder impingement….but it’s spleen connected. Weird huh?

Frankie

[Russ]

Frankie, please be sure to get that spleen checked out. Note the following: “Rare cases of a ruptured spleen and sickle cell crises have been reported in postmarketing experience with Neulasta®. Report symptoms of abdominal or shoulder tip pain to your doctor immediately.”
For more information on Neulasta®, please call (866) 822-4832. At this number I was transfered to a very knowledgable technician. Best wishes.

[Frankie]

Thanks for your concern, Russ.
I’ve discussed it at length with my hematologist and he says that it is going down on its own due to the Revlimid.
I’ve asked him about a splenectomy and/or radiation therapy and he says no. shrug

Frankie

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