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  #1  
Old Mon Mar 16, 2009, 06:21 PM
launch launch is offline
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Problems with Procrit

My husband was recently diagnoised with MDS (subcategory RAERS), but, they're re-evaluating it and it may be RA subcategory instead. He hadn't received the IPPS yet, we're waiting on those results. Anyway, he was diagnosed after being run down and had a routine appt with his cardiologist last month. His doctor ordered a full panel on Thurs due to my Husband's complaint of being run down and pale (anemic) appearance. All blood counts were low - RBC, WBC, Platelets. We made an appt with a Hemotologist the following week. That weekend, prior to seeing a Hematologist my husband got really weak and ran a fever so I took him to the ER, knowing he didn't have the blood counts to fight off infection. 3 days later, after mulitple inpatient tests, it was suspected he had MDS and a bone marrow biopsy was performed. 10 days following that, we learned my husband has MDS. He's quickly has been very very tired. He had 3 units of blood before he left the hospital and, after 1 month, had to have another 2 units of blood again. He gains his strength for approx 4 days, then, tired again.

He's also just been given Procrit, and I wonder if that's helping him or making him more tired? After Procrit injection #1 on a wed, he got very very tired, but, after the 2 units he got on that same Fri, he had energy for 4 days... but, a week later and Procrit Shot #2, his energy has steadily gone down hill... all he wants to do is sleep.

I wish I could do something for him. I've been studying/researching types of health diets/nutritional recommendations, etc.

Does anyone out there have any recommendations??? we do pray daily.

My husband is 65 yrs next month and use to be a very active - almost type-A person... like, he did everything that needed to be done "yesterday!"...

Last edited by launch : Mon Mar 16, 2009 at 09:18 PM.
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  #2  
Old Tue Mar 17, 2009, 05:24 AM
Vernette Vernette is offline
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Gets rough . .

Make sure he receives Vit. B-12 shots for energy and Omega 3 for kidney function. My prayers go to you. I have Aranesp shots and B-12 helping me.
My kidney Doctor told me that the kidneys first process me medication before sending it on. Wish is was a little faster!!
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  #3  
Old Tue Mar 17, 2009, 07:18 AM
Birgitta-A Birgitta-A is offline
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Procrit

Hi launch,
You probably already know that if your husband has RA his prognosis is good !

When you look at adverse reaction for Procrit for cancer patients fatigue is just as common in the placebo group (patients that are given “sugar pills”) as in the Procrit group:
http://www.theodora.com/drugs/procri...ERSE_REACTIONS

Regarding health diets/nutritional recommendations Vernette has already recommended B12 – I think your husband could take folic acid and B6 too. These 3 vitamins are important for the red blood cells.

Then I eat 2 types of probiotics every day and hope that they have a positive impact on the bacteria in my intestines.

MDS patients with low platelets have to be very careful with their platelets – there are a lot of drugs and food that decrease platelets or increases bleeding. Among these drugs is Omega 3 (that I took before dx). Here is a warning list:
http://www.pdsa.org/itp-information/itp-warnings.html

Then your husband should try to avoid infections – all infections decrease counts.

Hope your husband will feel better!
Kind regards
Birgitta-A
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  #4  
Old Tue Mar 17, 2009, 11:02 PM
launch launch is offline
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Hi Birgitta,
Thanks for your reply. Although I'm new to this forum, I've quickly recognized your name and appreciate your details you've provided to a number of other people too!

I had visited the link concerning platelets, the tough thing I'm finding is, while somethings are good to boost immunity (i.e. green tea), it's bad for platelets and can reduce them.. argh! That's what's so frustrating... I suppose it's finding a "happy medium"... see what combination works for each of us...

Right now, I'm working on removing my hubby from Dairy & Wheat to see if that has any affect. I had read that from an article posted in the MDS Foundation site. A gentleman mentions that we all may have allergies under the surface, and if you can elminate dairy & wheat for just 4-6 wks, then, perhaps you'll feel better, if, in fact, you're one of those individuals that do have allergies to either dairy or wheat.

If he does feel better, then, we'll slowly introduce either wheat or dairy back into the mix, and if he feels sluggish again, we know one part of the puzzle... that his immunities are also fighting allergens, etc... it's something we have control of, so, for now, we're trying it.

Another thing I was wondering... I know there was another post of low-grade fevers. My hubby (Ron) has had low grade fevers since he first went into the ER. He also sweats a lot from the neck up, when laying down. When he stands, he stops sweating, but, when he tries to sleep, he sweats.. not to the point he soaks his pillow, but, to the point it makes him very uncomfortable and damp. Poor guy. Wish I knew if this was MDS related. I'm thinking it probably is, but, haven't read any other posts about sweating.. unless I've missed them.

Again, thanks for your post. Thanks for your support! (ALL OF YOU!)
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  #5  
Old Tue Mar 17, 2009, 11:03 PM
launch launch is offline
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Quote:
Originally Posted by Vernette View Post
Make sure he receives Vit. B-12 shots for energy and Omega 3 for kidney function. My prayers go to you. I have Aranesp shots and B-12 helping me.
My kidney Doctor told me that the kidneys first process me medication before sending it on. Wish is was a little faster!!
Thank you so much for your information. I'll make a not of this, and mention it during our follow-up at Emory Medical Center next week.
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  #6  
Old Wed Mar 18, 2009, 08:22 PM
Mike Conlon Mike Conlon is offline
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Mike Conlon

When first Dx all counts were low. I took 3 scripts, 6 pills per day to ward off various possible infections. My understanding is Procrit is for RA. Your husband still basically has MDS. Why isn't he being treated with a drug such as Dacogen. My limited base of knowledge is if you are recieving blood transfusions you need treatment, not just diet changes or vitamin shots. For instance, what was the % of blasts in your husbands bone marrow test. There were several false starts, but I was Dx in May, 2007 with 12% blasts. I immediately started Dacogen and blasts dropped below 2% by the end of 2007. I was in total remission in January, 2009. I tend to think I might be the exception to the rule. I admittedly don't have all the answers, but I question why your husband is only recieving Procrit. I don't doubt your message at all, it just seems that something is missing. I would like to hear more about your husband's total diagnosis and treatment. Best wishes.
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Last edited by Mike Conlon : Wed Mar 18, 2009 at 08:23 PM. Reason: make good changes
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  #7  
Old Wed Mar 18, 2009, 09:57 PM
launch launch is offline
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Dx 2/18/09 - Fully results not yet received.

Mike,
Thank you for your concern & questions.. it helps me sort all of this out. My husband, Ron was just Dx 2/18/2009. He was told by his local Hemotologist/Oncologist he has RAERS and we don't have the IPPS (Risk Factor yet). Evidently, the DNA test are still in progress. We asked for a referral to Emory Medical Center (2nd Opinion, plus a teaching Medical Center that deals with Cancer & MDS).

On 2/26/09, we met once with the Emory Medical Center Chief Hemotologist/Oncologist and he said he wanted his own Pathologist to review my husband (Ron's) entire record/Bone Marrow Results, etc. and do his own count (% blasts, etc.). He believes Ron is somewhere between RA and RAERS. He started Ron on Procrit through our local Hemotologist, etc. and has asked for us to come back for a follow-up in 30 days from initial appt. Then, he'll have a plan of attack with his own numbers, etc.

He did explain that a patient with RA responds to Procrit more so than a patient with RAERS. He said, if, in fact, Ron has RAERS, there is a slight possibility he may respond, but, not a definate. Ron was tested for "Epo" and was very low on it.... it was very low... under 200 if I remember correctly.

Once all tests results are completed & we meet 3/27/09 to review everything, then, we'll have the plan outlined and we'll proceed from there. We do like the doctor there, and have decided, instead of doing the back and forth between docs, we'll opt to stay at Emory. It's too confusing to flip back and forth...

I'll give you an update on 3/27/09 or shortly thereafter. I'm not sure how people reference numbers here, because, his wbc total count were 790 last time we went in, but, I'm supposing that may be .79? His Hemoglobin was 8.8 two weeks ago before first Procrit shot, then, they also gave him 2 units transfusion 3/06/09. Then on 3/11/09 his Hemoglobin was 10.4 Also, his platelets were 105 when first diagnosed, then down to 98, now at 85. His wbc have been up and down... 700, then 1500, then 990, then 790... crazy and all over the place. He takes daily antibiotics right now to help fight off infections. He's had a cough (non-productive) since Dec'08.

Heat Doc has tapered his Atenenol (25mg) to every other day. Also, they've taken him off his 325mg aspirin he use to take 30 min before his Niaspan. He's running a low grade fever and sweats a lot at night from the neck up only. Two days ago, his family doc reduced his Niaspan from 2000mg to 1000mg daily.

What I plan to do is really talk with the Emory doc on 3/27/09 about all of Ron's meds. He had a mild angina type heart-attack 8 yrs ago and has been doing great. Med controlled hypertension & cholestral lowering meds too. He also takes Lipitor. I personally believe he's on way too much meds right now... also taking Flomax for Enlarged Prostrated approx 8 mons ago. was on Advodart until I bugged the doc to take him off it if no longer necessary. Was taken off that back in October...

Sorry about my jumping around... so much to sort out, etc... I'm taking notes and have a lot to discuss on next follow-up. Will update after appt.
Again, thank you! Cindy
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  #8  
Old Wed Mar 18, 2009, 10:58 PM
Mike Conlon Mike Conlon is offline
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Mike Conlon

Hi Launch: Emory must put you in the Atlanta area. You definitely want to go with one oncologist. I can tell you from my own tough experiences to also include your family doctor for things you don't think the oncologist is handling correctly. The oncologist is sometimes focused only on his area and doesn't respond to other concerns. I constantly complained about sleep 1-2 hours per night and lost 35 pounds in three months. On the third emergency room visit the doc got it right in 15 seconds. I was allergic to the anti-nausea medicine they gave before the chemo. I knew in Dec. 06 I had a major problem, but through a variety of problems I didn't get a final Dx until May of 07. So it would appear you are working in a good time frame. The % of blasts and the IPSS score are quite important. I assume they told you if his temperture goes above 100.5 to call the hotline 24/7. Good luck, prayers helped me a lot.
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Last edited by Mike Conlon : Wed Mar 18, 2009 at 11:02 PM. Reason: spelling
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  #9  
Old Thu Mar 19, 2009, 10:37 AM
helen c. helen c. is offline
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i completely understand the confusionmy husband was dx jan.08 with RAEB-1 intermediate MDS 5% blasts needed transfusions twice he was started on vidaza and procrite and neupogen after 5 rounds of vidaza and anothe bmb he had no blasts and was transfusion independent in sept. of 08 he was in remission and on watch and wait at checkup in dec. his red cells were still good but platlets were 99 i assume thats thousand i still havnt learned all the language yet so dr. made appointment for another bmb blasts were still lower than 5% but platlets were 56 red was 11.8 so started vidaza again and said he would continue on it until it doesnt work anymore also had chromozone 21 we dont know what that means but i dont think its goodlast week got a platlet infusion b/c they were at 17 and this week blood transfusion b/c red was at 7.6 and a slight fever hes on a lot of antibiotics and that better i feel like there is going to be another bmb soon she ( the dr.) is seeing him weekly now. i am very worried. also receiving procrit every mon. and neupogen 3 times a week
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  #10  
Old Fri Mar 20, 2009, 11:12 PM
launch launch is offline
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Question Update On Ron... Actual Numbers from Bone Marrow Biopsy

My hubby, Ron was dx 2/18/09. Today we met with our first Hemotologist who dx Ron with MDS, but, 3/27/09 we go back to Emory to see if their numbers (counts of blasts, etc) are the same as the one's we received today. My guess is they'll be very close, because, looks like the lab work was actually done at Emory afterall. (I got copies of everything to handcarry to Emory next Friday, as I don't want to rely on them forwarding it, etc). Then, we'll ask to come to Emory regularly vs going back and forth between docs as I alluded to in earlier emails.

Okay - experts, let me know if their is anything encouraging in what they gave us today: Not sure what to report... I have pages of reports, seem to be written in greek... I'm looking at lots of numbers... Interpretation basically states abnormalties in Chromosome 5, 7, 3, 6. Positive for deletion 5q31. Mentioned Ron had "MDS associated with del(5q)". The blasts are 4%. Also, indicates Anemia. Pancytopenia.

Today Lab results: WBC 2.9 K/ul, Neutrophil 22.1%. Lymphocyte 66.7%, Monocyte 7.9%, Eosinophil 2.4%, Basophil 0.9%, Neutrophils 0.64 k/ul, Lymphocytes 1.93 K/ul, Monocytes 0.23 K/ul, Eosinophils 0.07 K/ul, Basophils 0.03 K/ul, RBC 2.71 M/ul, HGB 9.3 g/dl, HCT 25.4%, MCV 94 um*3, MCH 34.4 pg, MCHC 36.6%, RDW 17.1%, Platelet Count 110 K/ul, MPV 10.1 um*3

3rd Procrit Shot today. Doesn't appear to be working. Of course, hoping it was RA only, we would have had a better chance, but, it's not, so, they weren't expecting results.... just hoping for them instead. Also, while we were first told, Ron would probably be somewhere between the IPPS of Low to Intermediate-1, we were informed today Ron is Intermediate-2.

Doctor recommended a Daily drug, I believe called Revlimid, but, because we're opting to go follow orders of Emory head Hemotologist/Oncologist, our local Hemotologist/Oncologist suggested we wait until Emory doctor confirms and comes to same conclusion due to protocol. Emory appt 3/27/09. Ron is very very tired right now, I'd like to start meds, like yesterday! But, one more week will be okay. I may see if they can work him in sooner than Friday next week, but, at least our appt is Friday 3/27/09.

PS. It's very difficult, because, Ron is very depressed with the sudden onset of this disorder, and just a few months ago he was out and about, etc.... type-A kind of guy... etc... now, all he wants to do is sleep. I wish I could do something for him. I just try to understand and not to put pressures on him.

Last edited by launch : Tue Mar 24, 2009 at 09:59 PM. Reason: spelling of Revlimid
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  #11  
Old Sat Mar 21, 2009, 07:03 AM
helen c. helen c. is offline
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im not an expert im sure that today some of the better informed will answer. but i do not like his white count hope hes on antobiotics already and his platlets count is ok but the HGB is dropping they give my husband procrite to boost that when his got to 8.5 he had diffculty breathing and got a transfusion very tiredafter the transfusion he felt better so if your waiting until the 27 th watch foor paleness and out of breath. i would want him in treatment now. please take care and our prayers are with you
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  #12  
Old Sat Mar 21, 2009, 09:54 AM
launch launch is offline
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Helen,
Thank you for the reply. I don't like his wbc either. They've been low from the onset. He's on daily antibiotics, but, has a constant cough... low grade he just cannot kick. I'm thinking along the same lines as you about his HGB. I don't really want to wait until 3/27/09. I may call this week to see if they have an earlier appt, or take him back to our local doc for another blood count. The procrit's really doesn't seem to be doing anything for his count at all.

God Bless...
Cindy
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  #13  
Old Sat Mar 21, 2009, 05:05 PM
Ruth Cuadra Ruth Cuadra is offline
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Hi, Cindy.

Your husband's list of chromosome abnormalities does seem extensive but there is cause for hope in the "del(5q)" (also called -5q) classification. Patients with this form of MDS typically respond very well to Revlimid, which is a brand name for lenalidomide. The Aplastic Anemia & MDS International Foundation has a page about lenalidomide with basic information plus links to current medical literature and clinical trials involving Revlimid that will help you learn more before your visit with hematologist next week.

Regards,
Ruth Cuadra
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  #14  
Old Tue Mar 24, 2009, 09:54 PM
launch launch is offline
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Update... things starting to happen

After Ron's lastest blood results & BMB results I posted on 3/20/09..... so much has happened.

We weren't scheduled to go back to Emory Medical Center until this Friday, 3/27/09 and i was especially worried about my husband's (Ron's) blood count, HGB 9.3, so, I decided to put a little pkg together since our last Emory visit, 2/27/09. I Faxed it with a coversheet, outlining our concerns and Faxed it to our Emory Hema/Oncologist, asking for an earlier appt. (Although I was previously told all records are shared, I knew a pkg outlining the situation, and attached blood tests and BMB analysis, etc. would be easier for the doctor to quickly review).

Today we were contacted, and the following has already been set up. Ron will go in early. He gets blood work tomorrow & we'll meet with the doctor to discuss treatment. Then, the doctor has also scheduled Ron for another BMB for his own anaylsis right at Emory Medical Center this Friday.

I am so happy because I was so worried about Ron's blood count and him being so very tired. We're both anxious to get him on some treatment. I'll update everyone tomorrow evening....

God Bless all of You.... ANd thanks for the Prayers!
Cindy
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Old Wed Mar 25, 2009, 09:26 PM
helen c. helen c. is offline
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hi launch

i replied to your private message but i dont know if im doing it right but anyway im so glad u got in early keep us posted and u are in our prayers, my husband starts vidaza again next week he got blood last week and so he has a little more enengy this week take care helen
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  #16  
Old Thu Mar 26, 2009, 11:20 PM
launch launch is offline
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Question Update - We have to choose Treatment option...???

Went back to Emory 3/25/09 (Yesterday). Ron's IPPS was inter-2 although we were hoping for a low or inter-1. The chromosomal aberations were more extensive than what we had first believed. Ron has 5-6 different chromosomal aberations, making his MDS more of a challenge to treat. We've been offered the following options:

#1 - Vidaiza and/or Dacogen as one treatment
#2 - Remlvid & Arsenic (Very Toxic ... he doctor discourages this option).
#3 - Clinical Trail (E1905 - PHase II Trial of Azacitidine with or without the Histone Deacetylase Inhibitor MS-275). In this trial, you receive a lower than normal dose of Azacitidine, but, receive it for 10 days vs the usual 7 days. Also, in addition, one control group will also receive the MS-275 and the other group, a placebo.

Right now we're leaving toward the clinical trial, but, it's all so confusing because we just want to get something started now.... to put Ron on the path of recovery/remission. If we want the clinical trial, starting next wednesday, we need to decide tomorrow... or wait another week.

Ron is very tired and his HGB was down on 3/25/09 (yesterday) again. He's getting another BMB tomorrow at Emory, more blood work, and the 4th Procrit shot that hasn't had any affect on his condition. We were told they give you at least 4 shots before determining you're not responding to it.

I personally believe Ron will get another transfusion tomorrow afternoon or Saturday... He looks pale and is very weak. At least we go back tomorrow.

The main stressor right now is making the right treatment choice....

I will pray that when we get up tomorrow we'll be at peace with our decision and be reassured by God's Grace that whatever we've decide is the correct choice...

I appreciate all of you out there! I told Ron, it would be helpful for him to participate in this Forum as well.... hopefully I'll get him here soon... right now, he doesn't like to talk that much about the actual "CONDITION".... we both are still in a bit of shell shock still....

so much has happened in the past 6-7 weeks and our lifestyle has been greatly impacted. He's been hit really hard because his passion & Love is for us to travel... this condition has really slowed us way down... for now...

Please keep us in your prayers... that we find peace in our decision... tomorrow.... Sincerely, Cindy:
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  #17  
Old Fri Mar 27, 2009, 06:00 AM
helen c. helen c. is offline
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life

hi, MDS is a life changing condition but its a life. my husband was the hardest working man i know he could work circles around our grandsons. when he retired he was going to take care of our land and cattle but this happened and now we go to doctors and clinics but u know i still have him we are spending a lot of time together enjoying watching our grandchildren take care of things for us watching my hummingbirds with me. when GOD closes 1 door he opens another. thanks helen
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Old Sat Mar 28, 2009, 12:20 AM
launch launch is offline
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Thanks...

Dear Helen,
Thank you for reminding me of the good things :-) We had a full day at Emory today, but, Ron's blood counts had come up a bit from wednesday on their own... prayers starting to kick in :-) His HGB went up from 8.9 on Wed to 9.3 today. Ron decided he'd participate in the Clinical Trial & we're both at peace with it. We did a lot of paperwork today and he had another BMB today and his 4th Procrit shot, oh yeah, and they took approx 14 vials of blood from him for tests, etc... pre-trial stuff. On Mon he'll get an EKG & some X-Rays, then, hopefully on Wed he starts on the clinical trial. Will find out on Wed if Ron receives the test drug MS-275 along with the 10-Day Dose of Vidaza on a 28-day cycle. Will update...

Cindy
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Old Wed Apr 1, 2009, 05:20 PM
LindaD LindaD is offline
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Neuopogen and Aranesp

My most recent MDS specialist follows the theory that 'booster' shots may also 'latch' onto the blasts, encouraging them to grow as well as the 'good' cells.

However, I received these shots from previous hematologist.

Anyone else hear of this theory, been taken off the growth shots? Blasts at last BM in Nov. 2008 jumped from remission to 9%.
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Old Wed Apr 1, 2009, 11:19 PM
launch launch is offline
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Linda,

That's interesting? So, is the MS-275 considered a "Booster Shot"? We went to Emory Medical Center today & in a random computerized selection process, my husband was not to receive the MS-275. He'll only receive the Vidaza injections for 10-Days on a 28-Day cycle. That's okay though. I'm very spiritual and I've prayed about it... whatever is God's will... I believe was the results of today's decision/selection... it's okay.

We're hoping for good results on Vidaza. My husband will receive daily shots for 10 days, and I want to say the dose is approx 105mg total (I believe it's mg). The doctors not expecting too many side effects - he's very encouraging.... <finger's crossed> and prayers continue, of course... tomorrow he gets another transfusion. Since dx mid Feb, Ron's received 5 units so far and tomorrow will make 7. They're doing a baseline for Iron Overload monitoring, etc...

And, while he has 5-6 chromosomal aberations, and RARS is confirmed with the second BMB last week, and all blood counts are low, his blasts are < 4%

Okay - been a long day... take care & good luck to you. I'm sorry to hear your condition is out of remission.... I pray you'll be able to tame it back into remission very very soon...

Cindy
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