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Transfusions and Iron Overload Blood and platelet transfusions, iron testing and treatments

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  #1  
Old Wed Dec 30, 2015, 02:14 AM
traceyn11 traceyn11 is offline
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Need Advice on Platelet Transfusion

So while I was in the hospital over Christmas, they decided to give me a platelet transfusion because my platelets were at 13. I am pretty sure that's where they have been since I had the Vidaza treatments and it crashed all my levels. I agreed to it and they gave me one bag which only brought me up to 17, so the next night they gave me another bag which took me up to over 40. I had a CBC today because I have an appt with the inf. disease dr. tomorrow. Some on call dr. called me tonight and wanted me to rush to the ER tonight (after 10:30) to get a transfusion. I told her I couldn't get a ride. So she wants me to go tomorrow after my id appt. I am really hesitant to do it especially since it has been at that level before and I am not bleeding anywhere that I know of. Unfortunately my hematologist is out of the office until 1/4, so I can't really talk to him about it. I just don't want to keep doing this every week because the lab freaks out. I have had that experience constantly with my low wbc and neutrophils. Also I am trying to avoid the ER because the flu and norovirus are in full swing right now. I know these on call drs. are just doing their jobs, but they also don't know anything about MDS.

Any advice? Should I leave a message with my hematologist office to see what they will say? No one else there really knows my case. The last time I saw my hematologist, he was fine with just waiting to see if it went lower since I wasn't bleeding anywhere.
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Tracey, mom & wife,age 58, dx MDS RAEB-2 4/15, normal cytogenetics, Update: SCT cancelled. Blasts at 67%. New dx AML.
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  #2  
Old Wed Dec 30, 2015, 09:14 AM
Marlene Marlene is online now
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John and his doctor set a transfusion threshold for both platelets and red cells. And unless he was experiencing problems like active bleeding or needing a procedure that was invasive he did not get platelets. Platelet transfusions don't always take. Some work better than others. Hives were John's biggest problems with platelets. And many times he didn't even get a bump from them. Even then, the bump didn't last very long.

His threshold after treatment was 10K and we dropped it to 8K. At 8K he did not have any bleeding. Some will go as low as 5K with Aplastic Anemia. We found that his own platelets, the few he had, worked just as well or even better than transfused platelets.

I would make sure your hematologist has your transfusion thresholds in your record so the other doctors can call the office to get more information about your situation if needed. Discuss it with the on-call doctor and let them know what level you and doctor have agreed upon. Every time we had to deal with ER doctors or any other specialist, they always contacted his hematologist before proceeding with any treatment. Sometimes I think they did it because they never had a SAA patient before and were a bit hesitant to treat without make sure first.

You may want to find out what your clotting times are. This is somewhat independent of the quantity of platelets. Platelets are one factor in the clotting process. John's clotting times were all normal even with 8K platelets. I used to mix him up some good old fashion Knox gelatin to drink. The original formula had clotting factors in it. Vitamin K1 supports clotting. I found that knowing his clotting times, eased my mind just a bit.
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Marlene, wife to John DX w/SAA April 2002, Stable partial remission; Treated with High Dose Cytoxan, Johns Hopkins, June 2002. Final phlebotomy 11/2016. As of January 2017, FE is 233, HGB 11.7, WBC 5.1/ANC 4.0, Plts 146K.
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  #3  
Old Wed Dec 30, 2015, 09:15 AM
SkipM SkipM is offline
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Tracey,
I would try to get in touch with someone in your hemo group. Is there an outpatient Infusion center you can get transfusions at? I'm in a similar situation and try to avoid emergency rooms and hospitals as much as possible.
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Old Wed Dec 30, 2015, 10:57 AM
traceyn11 traceyn11 is offline
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Thank you Marlene! I am pretty certain the threshold is 10k for me. I remember talking about it with my hematologist last time I saw him. Unfortunately since he didn't really seemed concerned about it, I didn't write it down. It was so late last night, the on call dr had not contacted the hematologist.

My inf. dis. doctor whom I see today knows the most about my case other the hematologist. I am going to ask him to look at the platelet count for the last several CBCs. If they are all around 13-14 which I think they will be since my surgery in Nov then I am going to ask if there are any notes from my hematologist about a threshold level. All the on call dr looked at last night was that my platelets had gone from 40 back to 14. I will check on the clotting time as well. I know that is a test they will do next week with the others for the stem cell transplant pretests. When I had my blood draw yesterday, it clotted just fine afterward with very little blood on the bandage.

Skip - I was thinking the same thing this morning about the infusion center. Yes, there is one there and I bet they can do it and I wouldn't have to pay the $50 copay either. My last 2 experiences with the emergency room were bad. When I went right before Christmas, it was so full of people with the flu, they had to transfer me to another hospital. Before that I went to have my picc line declotted and it took 3 hours for what was a 30 min. procedure. Since getting platelets won't be high on their emergency list, I am sure I would be there for 3 hours again. I can't imagine a worse place for me to go right now!
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Tracey, mom & wife,age 58, dx MDS RAEB-2 4/15, normal cytogenetics, Update: SCT cancelled. Blasts at 67%. New dx AML.
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  #5  
Old Wed Dec 30, 2015, 11:36 AM
Marlene Marlene is online now
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That sounds like a good strategy. I would have to agree that the on-call doc is going by standard operation procedure. Which is fine for those presenting with low platelets the first time or having issues. But in your case, if you've been doing fine on 13 -14K then they should understand that.

I used to carry around lab results so I could show them the trends. They sometimes have a difficult time hearing you so having "official" lab reports helps. I will never forget the time John ruptured his quad tendon while on vacation in Maine. The ER didn't even pay attention to the injury. They couldn't get beyond his low blood counts. His platelets at the time were in the 30's. We noted all of the medical history and blood count on the paper work, discussed it with at least 3 people before seeing the doctor and even then the doctor was still skeptical. I wish I would have had his records on that trip.

Best of luck with visit today.
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Marlene, wife to John DX w/SAA April 2002, Stable partial remission; Treated with High Dose Cytoxan, Johns Hopkins, June 2002. Final phlebotomy 11/2016. As of January 2017, FE is 233, HGB 11.7, WBC 5.1/ANC 4.0, Plts 146K.
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  #6  
Old Wed Dec 30, 2015, 01:31 PM
Data Data is offline
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10k

Tracey,
My platelets have gotten down in the 20s occasionally and I have never been given a transfusion for it. All the hematologist I have talked to (four total) have said they wouldn't even consider it unless I were less than 10, symptomatic, or had surgery planned. Just FYI.

Good luck!!!

Data
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Prostate Cancer: Treated in early 2013 with HDR Brachytherapy. MDS-RCMD: Oct 2014. Biopsies: 46,XY,t(7;18)[2]: 46,XY,del(7)( q22)[3]: 45,XY,-7[6]: 45,XY,-7[10]: 45,XY,-7[13]. HSCT in April 2016.
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  #7  
Old Wed Dec 30, 2015, 02:24 PM
bailie bailie is offline
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My only transfusion for platelets was right after my SCT when platelets dropped one time to 8. The cutoff was at 10.
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age 70, dx RAEB-2 on 11-26-2013 w/11% blasts. 8 cycles Vidaza 3w/Revlimid. SCT 8/15/2014, relapsed@Day+210 (AML). Now(SCT-Day+1005). Prepping w/ 10 days Dacogen for DLI on 6/9/2017.
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  #8  
Old Wed Dec 30, 2015, 07:45 PM
traceyn11 traceyn11 is offline
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Thank you Data and bailie.

I talked to the id dr. about it and told him my hematologist had set a threshold and that I really didn't think it was necessary to get platelets. I told him I thought they would just drop again next week if they even took and that I didn't think the hematologist wanted me to start getting platelets every week. I told him I wasn't bleeding anywhere and explained why I had agreed to get them when I was in the hospital over Christmas.

I also said if I did have to go in that I wanted to go the infusion center instead and not the ER because of the flu and norovirus.

He said he would not comment on it, but would send a note to the on call dr. who called my telling her what I decided. He didn't really try to talk me into it other than saying my platelets were at 14. I am hoping if the on call dr. is concerned enough, she will call hematology before calling me back.

I get my pretests next week for the transplant. I am sure I will be getting another phone call after that CBC too.
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Tracey, mom & wife,age 58, dx MDS RAEB-2 4/15, normal cytogenetics, Update: SCT cancelled. Blasts at 67%. New dx AML.
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  #9  
Old Thu Dec 31, 2015, 02:20 AM
DanL DanL is offline
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this is a good thread - here's my 2cents. My threshold was 10k or being symptomatic. We have an outpatient infusion center that we use whenever possible and try to avoid the ER like the plague that it can be given the relative lack of knowledge about MDS. I did not have any platelet transfusions until my transplant with the exception of getting dental work done. I lived for almost 5 years without transfusion as my platelets stayed between 20k and 30k the entire time.

For the most part the answer about when to transfer is 2 parts practical to 1 part personal. We obviously want to know that the transfusion is needed, and then want to be sure that we are comfortable living with the number that we create with the doctor.

Good luck with the pending transplant!
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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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  #10  
Old Thu Dec 31, 2015, 10:39 AM
traceyn11 traceyn11 is offline
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Thanks DanL - good advice. I don't really feel either of the transfusions took since less than a week later I was back at 14k. The only other time I had platelets was before my colostomy surgery.

I have been totally frustrated with the ER every time I go there. No one seems to know what neutropenic precautions are other than banning most fresh fruit and veggies and no flowers in the room. Sometimes they wear masks in the room and sometimes they wear gloves. So when I go, I always wear my mask and leave it on the entire time. Occasionally I might get a dr that has some knowledge of MDS. Unfortunately, the on call drs and home health nurses are trained to just tell you to go to the ER. That's how I ended up there for 3 hours for a picc line declotting.

Thanks, I am both scared and ready for the transplant at the same time.
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Tracey, mom & wife,age 58, dx MDS RAEB-2 4/15, normal cytogenetics, Update: SCT cancelled. Blasts at 67%. New dx AML.
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  #11  
Old Thu Dec 31, 2015, 12:35 PM
PaulS PaulS is offline
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OY

Before I had my transplant I was seeing a hematologist who was an expert in MDS - and is 2 hours from where I live. When we decided to try Vidaza she helped me find a local hematologist who would send me to an infusion center at a nearby hospital - During and after Vidaza, when needed transfusions, she would make the call and the local hematologist would tell the hospital what to do based on her input. When platelets came in lower than 40 the lab would notify the hospital who would notify the local doctor who, based on my MDS doctor would not order platelets - I don't think my platelets ever dropped below 20 during that period. I had the transplant in a big cancer hospital and the transplant doctor took over making most decisions, consulting with MDS doctor as needed. In the hospital they'd give me platelets when they dropped below 10 - which they did for several weeks (i think, time is fuzzy). After the transplant I've been given a couple of platelet transplants when they dropped below 20 (around 17) - but it was always a discussion and not every time. My guess is, if they dropped below 14 the transplant doctor would give me a transfusion - but that's in the context of being at the hospital for a visit - so what the heck - I don't think he'd treat it as an emergency at 14 unless I has having symptoms at that level -- but he might want to transfuse, in part, because he knows I'll be far away from the big hospital.

So -- getting any kind of infusion locally was much easier than traveling two hours and the local infusion center was great - but you probably need a doctor with admitting privileges at the local hospital with the infusion center to put in an order. Even my local hematologist was not especially familiar with MDS and his initial reaction was to transfuse when platelets dropped below 40 - he changed his mind after discussion with MDS doctor. Often I would talk to my MDS doctor and report back to local doctor what she wanted to do - and we'd do what she said.

Are you seeing a transplant specialist and a separate hematologist? - with the hematologist making the calls until you get the transplant? You should have a discussion with hematologist about what levels you should get transfusions at, and you should arrange with hematologist or local doctor to get them locally. I'd avoid the ER for such things if possible.

Platelets seem to go up and down by quite a bit - and transfusions have varying results but don't last too long - as you've discovered. Getting a transfusion now would not be unreasonable - but its a judgement call you and you're hematologist should make - and you should try and avoid doing it at the ER. If you don't get a transfusion - be careful not to cut yourself - definitely no rugby.

Interesting hearing about others experiences.

All the best,
Paul
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Lower risk MDS diagnosed 2012. Recurring skin nodules treated with prednisone, otherwise watch and wait. HG dropped from 11.5 to 8.7. Kept going down to 5. Vidaza didn't work. BMT from MUD on September 10 2015
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Old Thu Dec 31, 2015, 04:05 PM
traceyn11 traceyn11 is offline
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Hi Paul,
Yes I have a hematologist locally - 10 min away at the Kaiser hospital. He is very familiar with MDS and last time I saw him he had mentioned that the platelets were low, but that he was okay with it. I am 98% sure he said the threshold for transfusion was 10% then. Unfortunately he is out of town until 1/4 and I don't really know any of the other drs. in that group.

The transplant specialist is an hour away at City of Hope, so yes the local hematologist is calling the shots until the transplant.

No rugby for me! Actually I am scared about getting sick again and still feeling quite a bit of fatigue, so I am avoiding going anywhere other than drs. appts and walks outside. Luckily my kids are on winter break so there is someone home most of the time.

Yes it is very interesting hearing about other experiences and makes me feel more confident in my decision to hold out on the platelets.
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Tracey, mom & wife,age 58, dx MDS RAEB-2 4/15, normal cytogenetics, Update: SCT cancelled. Blasts at 67%. New dx AML.
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Old Mon May 16, 2016, 05:15 PM
Annettec Annettec is offline
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Need help to understand this next step....

My mother has been dealing with MDS high risk for 2 years exactly..... She is now 79 yrs old and while VIDAZA helped to keep AML at bay...it is no longer effective. I suspect her oncologist will discontinue treatment next month. She has been transfusion dependent for a year ( every 1-2 weeks now....) and as of today, she now needs platelets as well..... We don't know what's happening with her blasts as she has not had a BMB in the past 12 months.

What should we expect now? If she needs platelets this week, does that mean she will now require platelets from here on out? I keep hoping that once they stop treatments that she'll be able to have more time with supportive care ( weekly transfusions) or does this mean the end is near? Not ready to lose my mom.....😢

I so want to be able to support her as much as possible but don't know what to do.... Would appreciate advice.

Tks everyone,
Annette
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Old Mon May 16, 2016, 06:43 PM
bailie bailie is offline
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Annette, what were the indications that the Vidaza was no longer working? Was it a gradual decline in WBC,RBC and platelets? Or, was there a rapid decline? Or something else?
Thank you and I am sorry that the Vidaza stopped working. I just finished my 12th and last cycle of Vidaza post transplant. Did the Vidaza eliminate the genetic mutations?
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age 70, dx RAEB-2 on 11-26-2013 w/11% blasts. 8 cycles Vidaza 3w/Revlimid. SCT 8/15/2014, relapsed@Day+210 (AML). Now(SCT-Day+1005). Prepping w/ 10 days Dacogen for DLI on 6/9/2017.
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Old Mon May 16, 2016, 08:13 PM
DanL DanL is offline
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Annette,

I am sorry to hear about your mom's progression. It is really hard to say what that means as MDS has a very unpredictable course and varies from patient to patient.

Platelet transfusions are typically short-lived as platelets have a lifecycle of about 10 days from generation to expiration, whereas red blood cells typically have a 180 day lifespan. What that means is that fresh platelets when available are best, but the bump in platelets usually will last a week or less, but can help out for up to 2 weeks, depending on how well she is producing platelets.

There are some other options if she is not having any bleeding episodes that may be able to help. I think there are a couple of drugs that can be used to help with bleeding prevention such as Amicar. Most doctors don't like to prescribe this due to side effects, but it might be something to ask about if she is generally stable otherwise. Some people do ok down to 10k or even 5k platelets, but it can be dangerous if the patient falls, especially if they hit their head.

Dan
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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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Old Wed May 18, 2016, 06:28 PM
Annettec Annettec is offline
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Hi Bailie, although not yet confirmed, we expect her oncologist will stop treatment when she sees him on May. 30th. He initially wanted to stop last May but decided to continue as she was still benefitting from her treatment. She wasn't transfusion dependent at all during her first year...but the wheels came off in Year 2. She has been getting 1-2 red blood transfusions every 1 to 2 weeks. And this week, for the first time, she needed platelets ( one bag) but no red blood. I can't say otherwise, she has done a lot better than what we expected when she was initially diagnosed. Vidaza has been a godsend. She has tolerated the treatment quite well and has had very few side effects and for the most part, still enjoys life. This of course appears to be changing... Although she maintains she is feeling relatively well. Her counts have been decreasing consistently for the past 3 months so I sense we're entering a new phase of this damn disease. Am I kidding myself to think she might still be here next year? Her faith and zest for life, along with incredible support by her three sisters have been what has really sustained her! I am in awe of her courage and strength.

Is it possible to survive for a year or more on transfusions alone or does this mean she is transitioning to AML and only has weeks/months.....

I so appreciate this forum..... I will be forever grateful for this support....
God bless everyone dealing with MDS and other marrow diseases.
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  #17  
Old Wed May 18, 2016, 08:09 PM
bailie bailie is offline
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It is really great that your mother has done so well this long. What we all know is that everyone is so different and even the doctors often have no clue about time frames. This disease is not fair for anyone. Hopefully your mother can respond to the transfusions. It will be interesting to hear what the doctors say at the next appointment.
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age 70, dx RAEB-2 on 11-26-2013 w/11% blasts. 8 cycles Vidaza 3w/Revlimid. SCT 8/15/2014, relapsed@Day+210 (AML). Now(SCT-Day+1005). Prepping w/ 10 days Dacogen for DLI on 6/9/2017.
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