Neupogen or Neulasta

[Jerry]

Hi folks …

Does anyone take Neupogen/Neulasta shots for their MDS? My doctors have started me on a trial to see whether in conjunction with my Aranesp shots, they will increase my red count and hemoglobin. (Yes, I know Neupogen is for white cells, but they say there is some anecodotal evidence that with Aranesp it works on the red cells). Would appreciate any help that anyone can give on this one.

Thanks, Jerry

[Dennis]

When I first started on Vidaza, I got a Neulasta shot at the end of each cycle. But when my count got into the normal range, I chose to stop the Neulasta, because I didn’t like it. Counts slipped down until ultimately all counts passed back into the under-normal range.

Last Vidaza, I took the neulasta, and will have a cbc tomorrow, so Thursday we’ll find out.

D

[TEMBO]

My husband has not been given Neulasta. But I have a question for any of you that may have had Aranesp shots with out success and then stopped. My husband had numerous shots of Aranesp with out having any change in his hemoglobin. Before the shots his hemoglobin was usually 9.6 to 10. This is where it remained during the shots. His EPO rates have been very high before the Aranesp shots, so I thought that may have been why he did not respond. However, some weeks after the shots his hemoglobin dropped suddenly to 8 for the first time and stayed there without varying for a little over a month. Now his hemoglobin has moved back to 9.7 and seems to be holding. Has anyone had this type of response with Arenesp.

Many Thanks,
God Bless,
Karen

[patti]

Jerry,

I’ve heard of mom’s doc trying this. I do not know how it worked for those they tried it on. Mom was on Aranesp and Neupogen at the same time for 9 months and we didn’t see any change but I would also say that mom’s MDS is considered to be pretty severe – bordering leukemia. It may be hers was too bad to respond to the combo. It’s possible it might help you. I wish you could meet with Dr. Kou. You are in such a good solid position to be helped with the chinese medicine. I’m getting worried that John hasn’t responded to posts or emails. I may give him a call in the next day or two just to see how he’s doing. He was doing great when he left here.

Karen, my MIL took Aranesp for 9 months without any boost from it at all. The reason we chose to stop taking it (against the doctor’s wishes) was because we felt like if it wasn’t increasing good red cells it was probably increasing any bad cells she had and we believed that it was counterproductive. Shortly thereafter mom’s transfusions increased at break neck speed. Did her transfusions increase because the Aranesp caused the disease to progress or did the disease just progress and the timing coincided? That, is a million dollar question. The doctors will tell us it’s not related but we are not entirely convinced those two events aren’t related. If your husband’s Hgb is bouncing back that is a good thing. Mom’s never did. Please forgive me for not remembering, but what class of MDS does your husband have? Don’t know if this helped, but it was our experience.

all the best,

patti

[vitality]

Question to Dennis: You posted that you once chose to stop neulasta because you didn’t like it. What aspect about the neulasta did you not like? Thanks for your comments.

[Dennis]

My objections to the neulasta were rather petty — I figured my wbc was good enough and I could do without the extra needle every month, and the day of recovery — I would get the bone pain and flu-like side effects. No valid reason, really.

I was a good boy and took it last cycle. Ah, timing is everything — took it the last day of my work week, so I had a couple days to get over it. Wasn’t so bad.

D

[Jim]

Jerry,
I went through the Vidaza/Neulasta routine last summer. In October, the doc switched me to Aranesp thinking the Vidaza wasn’t doing any good. My Hgb went from the 9-10 range to 11.5-12.5 range by early December. I only had 1 or 2 Neulasta shots as needed during that time. I haven’t had a shot since and seem to be holding my own. Was it the Aranesp and the 1 or 2 Neulasta shots or a delayed reaction to the Vidaza? The doc’s not sure. I think your trial is worth trying.

JW

[Jerry]

Thanks all … I do appreaciate your responses … will let you know what happens … I can tell you this much … when Debbie dulls the needle tips on the counter before giving the shots to me, it accomplishes its purpose … the Aranesp is extremely painful and the Neupogen is just mighty painful … LOL !!

Jerry

[TEMBO]

Patti, Thank you for all your good information. My husbands diagnosis from MD Anderson as of January 2006 is moderate Myelodysplastic Syndrome, Refractory Cytopenia With Multilineagedysplasia (WHO). By FAB criteria, this case would be considered refractory anemia. His blasts are from 2 to 3%, I believe he is hyperplastic, with mild myeloproliferative disorder. Up to this point I have not been given his IPSS number.

I am still trying to get a working understanding of the specifics of this particular classification.

Patti, I see many folks post about high uric acid levels. My husband too has high levels since 1999 and, he was diagnosis with zero negative rhumatoid arthritis at that point. It seems that I have now read people with blood disorders like mds, leukemia’s, etc it is not unusal for their uric acid levels to be high. Do you have any information on the connection on uric acid and mds?

We are trying my husband on the large doses of curcumin for mds using the protocol from MD Anderson. Will let you know how it goes.

Thank you again for all you time and research.

God Bless,
Karen

[patti]

Karen,

I do not know of any specific research on uric acid and MDS. I think that what we “westerners” are consistently failing to do is look at the body as a whole. We want to treat this ailment or that ailment without treating the environment in our bodies that created the disease we have. That is another thing mom’s naturapath has pounded into our heads. If we don’t change the environment in mom’s body that allowed MDS to develop, then Dr. Kou fixing her bone marrow will be no good because the MDS will come right back as MDS or some other disease. So I think you have to look at the high uric acid level from that standpoint. The body environment is “toxic” thus creating all kinds of imbalances in the body, uric acid being one of them. BTW, one of the herbs in mom’s chinese formula is curcumin. Seems to be working for her.

Best wishes,

patti

[TEMBO]

Patti;

You mentioned BTW herb formula, do you think we might be able to get this blend from the Chinese Doc my husband has been seeing. Is BTW the best way to describe this to the Chinese Doc here?

Does your Mom use CoQ10 in any way with her supp’s. Some studies (ex. University of Mass.)are including CoQ 10 at 1200 mg to address the chromosome problems.

We have only been on the curcumin since Saturday. We have seen a slight improvment. He is only on 1 1/2 grams at the moment. The protocol is up to 12 grams.

Again, Thank You for all your info and thought…you seem to have really studied.

God Bless,
Karen

[patti]

Karen,

Sorry for the abbreviations. BTW stands for “by the way.” Is the doctor you’re husband sees a practioner of traditional chinese medicine? If he is, he should be able to give you a very good herbal formula for your husband. I’d wonder why he hasn’t yet if he is a chinese medicine doc.

No, mom doesn’t take CoQ10. Her naturapath (she sees a chinese medicine doc and a naturapath – they work synergistically) has really pared down her supplements. She told us that it’s actually not good for the digestion to take too many supplements so she does as many liquids as she can for mom and has really cut her back to just the absolute necessities. The chinese doc’s formula is a tea type thing she takes 3 times a day. He also does acupuncture for her bone marrow and spleen when she sees him. I double checked today and her appt. with him isn’t until the 6th of July. I’ll post a short note then to let folks know where her transfusions are at.

I suppose sometimes I’m a little too vocal with the natural stuff. :{ It’s hard not to share what has worked for mom since so many people could benefit from it. I used to be so “AMA” (American Medical Assn) with stuff and I’m so anti-AMA now. It’s weird how a major life experience like this can change someone. I am trying really hard to be balanced though because truthfully, not all medicine is bad. I think mom’s naturapath doing integrative medicine (both natural and medical) is an excellent balance. As for studying – I guess when mom decided no chemo that I was sort of forced to learn. I’m glad I did.

All the best to you and your husband,

patti

[Jim]

Quote:

Originally posted by Jerry:
when Debbie dulls the needle tips on the counter before giving the shots to me, it accomplishes its purpose … the Aranesp is extremely painful and the Neupogen is just mighty painful … LOL !!

Jerry

Jerry,
Tell Debbie to use the metal edge of the counter instead—it does a quicker and better job of dulling– Seriously, I found that sometimes it hurt others it didn’t. Try injecting the fluid very slowly and make sure the alcohol drys off the skin before she inserts the needle.

JW

[Jerry]

Thanks Jim …

We have tried fast, medium and slow … when WE do it slowly, my screaming just gets longer and louder and the poor girl is shaking like crazy and hurting me even more. Next week we are going to try shots of Canadian Club first. My only problem is I don’t know whether I should drink them or give them to her. Hmmmm… maybe we both should drink ’em. Thanks for the advice. Have a good weekend …

Jerry

[LuAnn]

Hi Jerry,
My dad has been on both Procrit and Neupogen shots for years. It maintained his HGB (which is his main problem w/MDS) until recently when he went on Vidaza. He still receives Procit shots 3x/week (6,000 units each shot) and Neupogen 2x/week (don’t know that dosage). Dad is a trooper so I don’t know if the shots hurt him cause I doubt he would show pain in front of me. But I see the nurses pinch the skin for the injection and one nurse even has him put his arm behind his back. Don’t know if these will help you but may be worth trying? Good luck!

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