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MDS Myelodysplastic syndromes

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  #1  
Old Sat Sep 16, 2017, 10:39 AM
JoMac53 JoMac53 is offline
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Question New here, Q about Neupogen?

Hi everyone. Was dx'd with pancytopenia on May 31st of this year in the ER and MDS after BMB on Aug. 22nd in the oncology clinic. Not 'officially' told what type or risk score yet but doc is already talking about transplant (forget if he said BMT or SCT, or if it even matters, he uses very general language most of the time.) But my ANC was 0.6 at diagnosis and it's 0.3 now. No infections but did have an episode of shingles. Doc now wants to give me Neupogen starting Tuesday. Shot in the arm 5 days a week but starting with only 2 or 3 to see if I react to it. He said how long but I forget. Reading the side effects online is a little scary (ruptured spleen?) and it's hard to tell what the experience in real life will be like. So that's my question...for anyone who has had Neupogen, what should I know ahead of time and is there anything I should do to prepare? I will try to write a more complete profile soon. Thank you. Jo
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  #2  
Old Sat Sep 16, 2017, 02:06 PM
Naive Naive is offline
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GCSF

Hi, I also had Neupogen injections. I resisted starting them because of the possible side effects but was eventually persuaded that the benefits outweighed the risks.

I found that to start with I only had to have one injection every second day and that interval grew to one injection every fourth day and then my ANC rose naturally above 0.5 (monitored by ANC response). I gave them to myself in the abdomen and I didn't notice any side effects at all even though I was warned I could get bone pain from the bone marrow regenerating.

I haven't had any for about a year now and I didn't get any long term complications from having the injections.

Carol
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  #3  
Old Sat Sep 16, 2017, 03:04 PM
JoMac53 JoMac53 is offline
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Thank you, Carol, that's encouraging to hear!
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  #4  
Old Wed Sep 20, 2017, 09:36 AM
lisa3112 lisa3112 is offline
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I had about 7 days worth when my neuts refused to budge prior to my sct.. Im talking 0.1 for nearly 4 week. It worked really well. Only side effects I had was hip aching... Guess that was the bone marrow. Belly is the go.. Not enough fat on the arms. Good luck!
Are you on antivirals for the shingles 😟 my grandmother also had good results with accupuncture for shingles. Sorry you are going through this.
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Now 30yr old. Diagnosed AML dec 2015 (Most likely MDS prior). Trisomy 6. Runx1 mutation also. Had induction and consolidation chemo. Marrow failure ++ so SCT on 21st of March with MUD. Married with a 1yr old!
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  #5  
Old Wed Sep 20, 2017, 02:42 PM
JoMac53 JoMac53 is offline
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Hi Lisa. Yes, I was given antivirals for the shingles. I went to ER as soon as I realized what it was and they gave it to me. It was the weekend so couldn't get to my medical clinic.

I had my 1st shot of GRANIX yesterday (Dr. ordered Neupogen but that was not in the clinic's Formulary). Within an hour (got the shot about 5pm) I had sudden onset of extreme back pain, came on so fast & stong it felt like someone kicked me in the lower back. My legs almost gave out from under me and my husband had to help me walk down the rest of the hall. The pain kept spreading from one place to another, back, hips, legs, knees, even my jaw & cheekbones. I took a percocet after about 20 minutes. It was mostly gone when I woke up at 3:40 AM but I still needed a Tylenol to get back to sleep. Feel better today but out-of-sorts.

Apparently I was also supposed to get Procrit but the doctor had not told me that and I had no chance to research it or talk it over with my husband so I declined to take it. Scheduled to get one shot of each every week until I see doc again on Nov. 7. They'll do labs everytime before the Granix shot, which is another thing no one told me. I'm not very happy with this Outpatient Oncology clinic so far. The nurse said they have quite a few other MDS patients and many people on both Granix & Procrit.
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  #6  
Old Thu Sep 21, 2017, 07:28 AM
Cheryl C Cheryl C is offline
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After 3 weeks of suffering shingles last year I took double doses of Olive Leaf Extract (on my brother's advice) and the pain was gone within 2 days.
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Dx MDS RAEB 10% blasts + hypogammaglobulinemia, Sep 2011. Jan 2012 BMB - blasts down to 2% w/out treatment so BMT cancelled. Re-diagnosis RCMD. On watch and wait since Feb 2012. IVIg 4-6-weekly. BMB Feb 2014 - no blast transformation. 2017 still stable.
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  #7  
Old Sat Sep 23, 2017, 10:58 PM
JoMac53 JoMac53 is offline
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I'll have to remember that treatment!
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  #8  
Old Sun Sep 24, 2017, 09:22 PM
Cheryl C Cheryl C is offline
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I'm really surprised that you received the shingles injection as it contains live virus. It's not recommended for MDS. There is information on-line about this.
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Dx MDS RAEB 10% blasts + hypogammaglobulinemia, Sep 2011. Jan 2012 BMB - blasts down to 2% w/out treatment so BMT cancelled. Re-diagnosis RCMD. On watch and wait since Feb 2012. IVIg 4-6-weekly. BMB Feb 2014 - no blast transformation. 2017 still stable.
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  #9  
Old Mon Sep 25, 2017, 05:13 PM
JoMac53 JoMac53 is offline
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Cheryl, I didn't, I was given the antiviral medicine Acyclovir to treat the shingles. The shingles just broke out on their own, probably from low neutrophils & the stress about getting the BMB. (I was very stressed about it.) Also, in my job as a home health caregiver, I had recently been exposed to a client who recieved the shingles vaccine, I took her to get it and continued to work with her 3 days a week. At that time, I didn't know I had anything wrong with me.
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Jo, 63F; May '17, Pancytopenia; Aug '17, Primary MDS RAEB-1, Intermediate-1. Trying Granix again with Claritin this time for ANC of 0.1.
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  #10  
Old Tue Sep 26, 2017, 06:39 AM
Cheryl C Cheryl C is offline
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Oh good! Glad to hear that you didn't have the vaccination JoMac. All the best as you consider treatment options for your MDS. I'll be watching for your posts.
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Dx MDS RAEB 10% blasts + hypogammaglobulinemia, Sep 2011. Jan 2012 BMB - blasts down to 2% w/out treatment so BMT cancelled. Re-diagnosis RCMD. On watch and wait since Feb 2012. IVIg 4-6-weekly. BMB Feb 2014 - no blast transformation. 2017 still stable.
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  #11  
Old Tue Sep 26, 2017, 10:08 AM
JoMac53 JoMac53 is offline
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Thank you. I'm going for the 2nd Granix shot today. If my hemoglobin is lower than last week I'll accept the Procrit shot. Really wish I had a doctor I liked better, one that I could talk things over with. Well, maybe next year when I sign up for medicare.
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Jo, 63F; May '17, Pancytopenia; Aug '17, Primary MDS RAEB-1, Intermediate-1. Trying Granix again with Claritin this time for ANC of 0.1.
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  #12  
Old Mon Oct 2, 2017, 01:51 AM
AliceKay1 AliceKay1 is offline
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JoMac, I don't have a doctor I can talk with, either. I'm told he's brilliant and the local specialist on MDS, so that's a plus, but he's too busy, I guess, to be available when I need him. Thank goodness the oncology nurses are all friendly.
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AliceKay1, 79 years old, dx MDS 2017, being treated with Vidaza
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  #13  
Old Mon Oct 2, 2017, 12:11 PM
JoMac53 JoMac53 is offline
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I'm seeing this hematologist/oncologist through a clinic for low income, uninsured people. I don't know what his reputation is as far as MDS but I'm going to see what I can do about getting a 2nd opinion about treatment. I may refuse the 3rd Granix shot if my counts are lower again tomorrow. I don't even know if the doctor is checking my numbers or is being kept apprised of what's happening with me or not. I have a bruise on my arm from last week's shot that's 6"x2" with a hard 'lump' inside that's 2" long by about a half inch wide. I went back to the clinic Thur of last week (shot was on Tue) and showed it to 3 nurses, including the one who gave me the shot. She seemed shocked, like she'd never seen anything like it before, apologized that this happened to me, and acted like she didn't know what to tell me, just to 'maybe put warm compresses on it'. My doctor's only there 2 days a week (Tue & Wed) but there are other doctors there on the other days. You'd think one of them could have taken a look if it was that unusual.

I also found out some of the drugs used to treat the anemia part of this condition (of which mine is getting worse since starting the Granix, as well as the platelets) are made using aborted fetal cell lines which I don't want to use. Granix is not one of them. I'll probably end up with transfusions until I can figure out what to do.

And I want to know how long he's going to wait to check if my blasts are increasing. I think I'm going to insist on talking to him tomorrow. I'm getting very upset, waking every morning at 3-3:30 and unable to get back to sleep without taking a Xanax for quell the anxiety that keeps my mind racing.

Hard to be keep positive in a situation like this.
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Jo, 63F; May '17, Pancytopenia; Aug '17, Primary MDS RAEB-1, Intermediate-1. Trying Granix again with Claritin this time for ANC of 0.1.
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  #14  
Old Tue Oct 3, 2017, 02:11 AM
AliceKay1 AliceKay1 is offline
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Smile Good luck

JoMac, I would think heat on your bruise would just make more blood come to the surface. If that doesn't help, try ice for twenty minutes, but what do I know? Nothing.
If your doctor is only there 2 days a week, he probably has his own practice somewhere else. He could be the best doctor in town for all we know. Check him out online.
You're right, this stress is not good for you. I hope you can get some answers do you can relax more. Good luck. I have a feeling you're going to be ok.
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  #15  
Old Wed Nov 8, 2017, 02:04 PM
JoMac53 JoMac53 is offline
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Just a little update

Had quit Granix shots due to increasingly varied & increasingly painful side effects. ANC tanked to 0.1 after stopping shots but platelets recovered back up to 106. However, Dr. says ANC more important than platelets. Had a good long talk with him. First time he did not seem to be in a hurry. He addressed all of my concerns, did not scoff at anything. Said we have lots of options - I said it didn't feel like that! He said he never ruled out wait & see but he never said to me that it was an option and really indicated it was not when ANC first dropped to 0.1. I finally got a sub-type & risk score, at diagnosis it was Primary MDS RAEB-1, Intermediate-1. So now we've decided to try the once-a-week Granix shots again with Claritin this time. He also gave me Xanax & Percocet because the anticipatory anxiety had developed into real dread which disappeared the minute I decided not to accept the shot at the infusion center and he doesn't want to that to develop again. If the Claritin & Perocet can help reduce the bone pain & the Xanax can decrease the anxiety cycle, which could have been adding to the other side effects, then I guess I can live with the shots once-a-week. Especially since I may not be able to live without them!
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Jo, 63F; May '17, Pancytopenia; Aug '17, Primary MDS RAEB-1, Intermediate-1. Trying Granix again with Claritin this time for ANC of 0.1.
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  #16  
Old Thu Nov 9, 2017, 10:36 PM
Meri T. Meri T. is offline
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Neupogen shots

Jo,
I had some neupogen shots AFTER my sct to help boost my WBCs.
I remember the bones in my back really hurt, especially my spine.

Drugs have side-effects, so I usually ask everyone, and I mean everyone, my doctor, nurses and pharmacist, what the side effects will be when a new drug is prescribed.

You are where I was last year, MDS RAEB-1, Intermediate 1. This is a very informative forum, so if you have time you could look up the older posts too.
Hope the granix works out for you. Keep posting.

Meri
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  #17  
Old Fri Nov 10, 2017, 08:07 PM
JoMac53 JoMac53 is offline
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Claritin worked!

Well, the Claritin worked better than I ever could have hoped. It's like I didn't even get the shot, you'd never know, there are no side effects at all this time.

However, the nurses insisted on calling the doc to report how nasty the little "sore" on my rib cage looked compared to how it looked last Tuesday and he said go to the ER to have it evaluated in light of ANC of 0.1. So I spent 3 hours there getting the "abcess" lanced, drained & packed. Doc said there was hardly any pus -- because you need neutrophils to have pus. I feel so grateful I had no bone pain while going through that!

Do wish the doctor or nurses had told me about Claritin sooner, though. Don't understand why they wouldn't.
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Jo, 63F; May '17, Pancytopenia; Aug '17, Primary MDS RAEB-1, Intermediate-1. Trying Granix again with Claritin this time for ANC of 0.1.
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  #18  
Old Fri Nov 24, 2017, 06:43 PM
JoMac53 JoMac53 is offline
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So, bad news is the following week the shot was almost as bad as it had been without the Claritin. Good news is ANC was up to 1.2 from just the one shot.

I had stayed on the Claritin daily (doc's idea) but decided maybe it would work better if I went off it after the shot, then back on a couple days before the next shot, which is closer to what I did the first week. I didn't get to test that theory today as my ANC was 2.1 and doc's orders say skip shot if over 1.5. So, yay. I'm scheduled for labs & possible Granix shot every Friday until the end of December for now.

I guess the worst news is I have 3 blasts in my CDC today. I think that's 3% as the reference range is 0%. This had to be called in to a doctor so I'm guessing it's as bad as the critically low ANC was. I had asked the doc about the threat of increased blasts from the Granix shots and he sort of pooh-poohed the idea, saying it came from one clinical trial of Procrit on people who did not even need the treatment at the time to see if it would make them feel better. I wondered about that answer.

Well, I hope everyone had a nice Thanksgiving. We were missing one daugther, one granddaughter (has mono), and one grandson (away at school), but we had a very pleasant day that wasn't too taxing on me, which is a good thing! And I finally learned to make pie crust in my food processor instead of by hand. lol
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Jo, 63F; May '17, Pancytopenia; Aug '17, Primary MDS RAEB-1, Intermediate-1. Trying Granix again with Claritin this time for ANC of 0.1.
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