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  #1  
Old Sat Sep 23, 2017, 09:13 PM
JoMac53 JoMac53 is offline
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Granix and Procrit are not FDA approved for MDS?

It's my understanding Granix (tbo-filgrastim) and Procrit are not FDA approved for MDS because they can increase the blast count but my doctor wants to give me both.

My last blood counts were WBC 2.7 (ANC 0.3), RBC 3.96 (Hgb 9.5), platelets 118.

According to the BMB flow cytometry I have "Left-shifted myeloid maturation pattern with 1.8% myeloid blasts." It says "the findings raise concern for a myeloid neoplasm" but to correlate with the manual blast count because the flow cytometry can over or under estimate the blast count. The manual count said "up to 5-6% in CD43 stained trephine biopsy sections."

I have taken the Granix once but refused the Procrit. Have these drugs become accepted as an off-label use for MDS? Does anyone know the actual risk of increased blasts? Do they decrease if the drugs are stopped? I've been searching for answers online but not getting anywhere. Any info would be most appreciated.
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  #2  
Old Sun Sep 24, 2017, 01:03 AM
DanL DanL is offline
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there are several studies that have employed either one or both of these drugs, but due to the cost of the approval process, the manufacturers have not sought FDA approval. Many doctors treating MDS have used these drugs, primarily in lower-risk patients to boost a patient's production of either white or red blood cells.

Research has indicated that there may be increases in blasts with both drugs, but it seems to be reversible in many cases, and in others it is simply progression of the underlying disease. (please forgive the seemingly cold term of simply)

I know that we have had several users on the forum who have experience with one or both of these drugs, hopefully they will comment.
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MDS RCMD w/grade 2-3 fibrosis. Allo-MUD Feb 26, 2014. Relapsed August 2014. Free and clear of MDS since November 2014 after treatment with Vidaza and Rituxan. No longer experiencing nor treating CGVHD. Working on fixing long-term side effects of AVN in hips and cataracts in eyes. Life is good!
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  #3  
Old Sun Sep 24, 2017, 12:10 PM
Hopeful Hopeful is offline
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Quote:
Originally Posted by JoMac53 View Post
It's my understanding Granix (tbo-filgrastim) and Procrit are not FDA approved for MDS because they can increase the blast count but my doctor wants to give me both.

My last blood counts were WBC 2.7 (ANC 0.3), RBC 3.96 (Hgb 9.5), platelets 118.

According to the BMB flow cytometry I have "Left-shifted myeloid maturation pattern with 1.8% myeloid blasts." It says "the findings raise concern for a myeloid neoplasm" but to correlate with the manual blast count because the flow cytometry can over or under estimate the blast count. The manual count said "up to 5-6% in CD43 stained trephine biopsy sections."

I have taken the Granix once but refused the Procrit. Have these drugs become accepted as an off-label use for MDS? Does anyone know the actual risk of increased blasts? Do they decrease if the drugs are stopped? I've been searching for answers online but not getting anywhere. Any info would be most appreciated.
Hi JoMac53,

Are you RBC transfusion dependent? Have you had your EPO tested and was it low? Most studies that I have seen indicated that Procrit/Arsnep are not likely to work if someone has a normal or high EPO.

That being said, when I was transfusion dependent, my EPO was tested and was low. My hematologist refused to give me the Procrit shot because he had previously worked with patients that had solid tumors, and they had died because EPO shots had increased their cancer growth. When he told me that, I stopped asking for the shot!

I tend to think that if you don't need the shots (aren't transfusion dependent) don't get them. The shots don't work forever (if they do work) so it is better to save them in your bag-of-tricks for when they are needed most.
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50 yo female, dx 9/08, AA/hypo-MDS, subclinical PNH, ATG/CsA 12/08, partial response. Tried slow cyclosporine taper over 4+ years. Platelets fell, so back on cyclosporine. Trisomy 6 clone in 5% of cells.
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  #4  
Old Sun Sep 24, 2017, 08:05 PM
Cheryl C Cheryl C is offline
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Hi JoMac. In 2012 Neupogen was discussed for boosting my chronically low WBC but my haematologist informed me that there would also be a risk of my blast count increasing again, so I decided not to take that option. 5 years later my average WCC has decreased a little (now around 1.5), and my RBC averages 3.4 but my blast count has remained stable. Have you had your globulin levels checked?
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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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  #5  
Old Tue Sep 26, 2017, 09:38 AM
JoMac53 JoMac53 is offline
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Sorry, I guess I wasn't subscribed to get notices of replies to this thread. Still getting used to the boards.

I have never had a transfusion. My EPO level was 19 (ref range of 4-27). My ANC is what's driving this doc, I think, and the week he ordered the Granix it was 0.3. The one they did the following week, right before the shot, was 0.5. I joked with the nurse saying then I didn't need it but took it anyway. In hindsight maybe I shouldn't have.

My blasts were 5-6% based on microscopic examination of my bone marrow biopsy. It showed trilineage hematopoiesis with left shifted myeloid lineage with markedly reduced bands and segmented neutrophils. Occasional dyserythropoietic forms noted. Iron stain did not show stainable iron.

I'm going to look for the proper forum to post all this bone marrow stuff and maybe get some help to understand this. I really find it hard to believe I'm not scheduled to see the doctor again until Nov. 7. He's okay with answering questions but I have to know what questions to ask, he doesn't volunteer information.
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  #6  
Old Wed Sep 27, 2017, 08:37 PM
Cheryl C Cheryl C is offline
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I think you're probably on the right forum here JoMac, as there are knowledgeable people who should be able to help you understand your BMB and other lab reports.
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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 Wed Sep 27, 2017, 11:00 PM
JoMac53 JoMac53 is offline
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Feel like I'm getting more confused instead of less.

I went yesterday for the 2nd Granix shot. WBC was up to 4.4 (from 2.9 the week before) but ANC was down to 0.1 (from 0.5 the week before). ANC going the wrong way!

Bone pain was worse & lasted longer. Percocet didn't help as much as last week. Neither heat nor ice helped. Woke during the night sweating, woke again early this morning with fast heart rate (108) and thumping heart. Felt bad all day today with severe low back pain, other joint pain, headache, and chest felt heavy when breathing and painful if I tried to lie down on my back. (My husband had double by-pass surgery last summer and I imagine that's what his chest must have felt like when he tried to lie down.) Also have a huge bruise & lump at injection site.

Definitely didn't bounce back this week like last week.
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  #8  
Old Fri Sep 29, 2017, 02:52 AM
Cheryl C Cheryl C is offline
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I don't know anything about Granix, JoMac. However I looked it up on line (https://www.google.com.au/search?q=s...hrome&ie=UTF-8) and the advice is to seek medical attention if you experience a fast heart rate and sweating, among other side effects.
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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 Wed Oct 4, 2017, 12:21 PM
JoMac53 JoMac53 is offline
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3rd shot yesterday, was very anxious ahead of time about the bone pain and considered refusing the shot or taking a Xanax first but didn't. Still have that huge bruise & hard lump on my arm where last week's shot was and was told it should never have been given in the same arm, supposed to rotate to different place each time. Personally, I think the nurse got the needle in the wrong place, supposed to be in subcutaneous fat. Way too much blood for that. This week's nurse put in other arm and no problems at all, just like 1st week. She couldn't get blood for draw, tho, and ended up getting a different nurse and using the other arm. But blood work results an hour later were a surprise, platelets down to 82, RBCs at 4.00, WBC are high at 11.8 with ANC at 1.4. That's the highest the ANC has been since this all started May 31st. Range for this lab is 1.8-8.0 so perhaps no shot next week. They'll do the CBC and call the doc to see what he says. Starting to have symptoms of low platelets but not too bad yet. Reducing platelets is a 'severe' side effect of Granix, tho the nurse wasn't aware of it. She said it wouldn't be critical until down to 10 but not sure I believe her.

As for the pain, I brought 2 percocets with me and took them immediately after getting the shot. Was fine until about the 45 minute mark when I got the headache & could feel bone pain in my cheek bones & eye orbital bones. Nothing anywhere else. I fell asleep and woke up at the 3 hr mark with bad bone pain in the upper arm of the arm that got the shot but it wasn't from the shot itself. I think it was because I was sleeping on that arm. It took about an hour for that to go away and I didn't have any more pain or take any more medication. I slept through the night and woke at 6am with heart rate 120, sweating & weak. Had to lie on couch to keep it down. Was back to normal by 8am and hasn't come back.

I am still worried about whether this is increasing my blasts or not. Doc has done a flow cytometry on peripheral blood before, wonder if he will again. Would rather not get another BMB.

Cheryl, yes, I will report the sweating & fast heart rate.

Youlgron, I'm mostly asking questions as a newbie myself but if my posts telling of my experience helps any way that's good.
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  #10  
Old Yesterday, 10:35 AM
JoMac53 JoMac53 is offline
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Quick update before I go for blood draw & Granix shot today -- I'm going to refuse it, no matter what the blood work shows! I thought it was going to kill me last week, symptoms from the shot are, increasing, getting worse & lasting longer. Almost went to ER but hate to do that so didn't but honestly thought I might die from a heart attack. I really believe the Granix is driving my platelets down, too, even though the nurse said it could just be my disease. They had slowly decreased from 127 to 121 on their own but since getting these shots they've jumped down weekly by 15, 24, & 14. I don't yet know how much damage the 4th shot did last week. The only numbers going up are the other white cells, not neuts.

I've started taking the K2(MK-4) 45mg doses with vit. D. along with some other supplements, and reduced my already low carb diet to a therapeutic ketogenic range. I'm going to add fasting as well. I really wish I could find a doctor who would support these treatments, and advise me more knowledgeably about supplements, but that's not likely to happen. I'm going to read the messages to see what supplements others here have taken or are taking. I haven't been able to spend too much time here because I get too depressed.

The Dayspring Cancer Clinic in Scottsdale, AZ, does the whole protocol for what my own research led me to but they cost $18,000 a month. The person I spoke to said they haven't had any MDS patients but MDS does exhibit the "Warburg effect" so should respond to their treatments.

Well, that's it for now. I'll update later today. I see the hema/onco doc next Tues. Don't know what he'll say about my 'refusal' but it is what it is.
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Old Yesterday, 11:07 AM
Neil Cuadra Neil Cuadra is offline
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I haven't read about the Warburg effect before. The best article about it (in layperson's language) that I've found is a New York Times article.
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  #12  
Old Yesterday, 11:55 AM
JoMac53 JoMac53 is offline
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Yes, that's a pretty good article. Thanks for finding & posting it. It's good to share with the uninitiated before hitting them with scientific studies, clinical trials, research reports, etc. lol
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