Help with low platelets

[Kathy7964]

Hi–My Dad was finally released from the hospital after a six week stay and his counts won’t go up at all. They were giving him Nuepogen 3 times a week for over 2 weeks and his wbc’s are 1.0. His platelets were a 0 less then a week after a platelet transfusion. They are giving him “special” platelets that match his. He completed 1 round of Dacogen in August and his blasts went from 15% to 0 but the doctor said his bone marrow is “empty”. He is getting plts and rbc tx’s twice a week. Today he woke up with his legs and feet covered with black and blue spots everywhere. He does have the small pin-point size petechae but these are bigger.

Does anyone have any problems with platelets? Or getting that many transfusions in one week? How do they know if he would start bleeding internally?

I don’t know what else we can do for him.

Thanks,
Kathy

[SusanJ]

Kathy,

I’m so glad that your dad is finally out of the hospital. I can only imagine how exhausted you are. My dad’s platelets are always low. As far as I know, the lowest they have gotten is 17. He had 2 platelet transfusions when he was in the hospital last month. They didn’t help much. His platelet count this week when he went to the doctor was 33. The doctor said that he will proably need a red blood transfusion very soon.He runs a low grade fever everyday. I’m not sure how much worry one can take. I really don’t have any answers for you, I can only sympathize. I know how helpless you feel. You are always in my prayers. God bless you.

Susan

[Terri]

Kathy, Bob has had a platelet prob and if you read back on some of my post we had some scares, A subdural brain bleed and in August intestinal bleeding from the low platelets. The bleeds have been triggered from stress. He was hospitalized both times they did give him Plt transfusions. This last time with the intestinal bleed he ended up with 9 Packed red cell transfusions as he could not keep the hgb up due to the bleeding. Once they got him stablelized with the counts they did radiation on his spleen to reduce it. So far his plts are holding they had gotten down in the 20’s now they are hovering 48, 53 etc. His hgb hovers 10-11.5. At one pt before he was down to 6.2.
I will tell you when he goes off his Nutrional diet I do see his counts falter a little.
He eats red meats for hgb, green veggies fresh and I am upset about the spinach thing. and tons of pineapple for the plts.
I hope your dad starts feeling better.
Bob is RAEB-t

[Carl]

Here’s a web site that tells you drugs and foods to avoid if your platelets are low.

http://www.itppeople.com/warnings.htm

[Kathy7964]

Hi everyone and thanks for your help. His doctor has not mentioned his spleen or ITP at all. I don’t feel that his doctor provides my Dad with enough information about this disease. The doctor has never mentioned anything about diet either. He just basically tells us that my Dad will just require transfusions for now and he will no longer give him anymore chemo treatments. This forum has been so helpful and I’ve been really discouraged lately so I don’t respond.

I did ask his doctor last week about the blasts and how fast they could come back and his reply was he will do another bone marrow biopsy soon.

My Dad’s appetite hasn’t been much and he’s not big on vegetables. He’s not eating healthy and doesn’t say too much.

Thanks so much for all your info. I am praying for everyone and their families having to deal with this horrible disease.

Thanks,
Kathy

[Harold]

Kathy, I have had a long standing problem with low platelets. For me, “normal” platelet transfusions only last about one week. HLA-matched or cross-matched platelets do give a better response in terms of the platelet boost and platelet survival. I do not normally have a platelet transfusion until the platelets are below 5000-6000. When the platelet count reached about 1000, I will have numerous petechia and larger reddish/purplish spots in my mouth and a few spots in other areas of the body. I will also have a few significant black and blue spots (bruises) on the arms and legs. I feel very lucky that I do not have bleeding despite these very low platelet counts. I think it varies from person to person as to the platelet count when they become symptomatic (bleeding) and it must be monitored carefully.

[Terri]

Harold Is right, The plts don’t last long and the more and more plt transfusions the more they may not work at some point. When Bob was hospitalized they were concerned on Too many transfusion fearing that in the future if it started again the tx might not help him. SO far that has not happened and he has not had any additional tx.
This disease effects everyone so differently as well as the treatments effects seem to differ so.
I continue my prayers for everyone

[Kathy7964]

Thanks again for everyones help. Harold sorry but on his cbc’s the platelet count shows blank or they tell us a 1 or a 3. I’m confused with the 1,000 count. Is that the same as a 1? He does have the spots on his legs. Sometimes his nose bleeds a little and we panic.

Terri–how would we know he is bleeding internally? He got a transfusion this past Thursday and today his plts are a 1. I feel really helpless not knowing.

Thanks again so much for your help.

Kathy

[patti]

Kathy,

The 1 means 1000. Have you told his doctor you want HLA matched platelets? Sometimes doing an exact match will make the platelets last longer. Also, I find that we just have to tell the doctor what we want and don’t take no for an answer. You are your dad’s best advocate with the medical community.

I think people might present internal bleeding a little differently but there are a few similarities. If he’s bleeding a lot internally his bowels will be tarry black and/or his urine red. My MIL had a “slow” gut leak which just made her weak. It was slow enough that her body took care of it before it could turn her stools black. The doc figured it out more by process of eliminating other possibilities then by being able to pinpoint it.

Terri will probably be able to fill in the blanks with more info that way.

Take care.

patti

[Terri]

Kathy, THe first time with the Subdural brain bleed we did not know really until the blood put pressure on the part of his brain that effected his motor skills. He looked like he had a stroke. Actually they pumped him with plts in the hospital We came home and he had to go through Physical therapy since we was in a wheel chair and was unsteady walking. The blood did reabsorb into his body and now he is back walking and everything like it never happened. It Scared me so though when it was happening but there was nothing they could do, Surgery not an options with plts so low.
The internal bleeding in the stomach. Patti is right, It was going on over time, then his stools got black, Bob is always constipated due to the meds. They did a sample there was blood in it but not a lot, but His hgb could not stay up.
In the hospital they scoped passing down through the throat into the stomach etc and they did see little lesion likes in the gastro area that he was bleeding from. Again pumped with RBC and some plts. They bleeding just stopped, He is on med to keep the bowels moving and so far he is good.
Then he had the radiation to reduce the spleen they thought this was eating us his plts. That went well so far too.
I pray so much.
I know I have posted all of this before and I apologize to those that have read it before but I any of this can help then Its not a waste.
God Bless

[lbeachbum2]

I have had 3 Platlett tranfusions in the last week …tomorrow I go in at 10 for another … this is 2 weeks after Dacogen chemo

[Kathy7964]

He has been getting the HLA platelets but they are not lasting. I don’t think they have been over a 5 for weeks. He had a BMB on Wednesday and his blasts are at 1%. The doctor still thinks his bone marrow just may kick in.

Thanks for all your help on this.

Kathy

[Kathy7964]

Terri,

Thanks for your info and yes I have read several of your posts over and over again trying to understand how this could be happening to my Dad. I learn so much from others on here.

He doesn’t have any pain near his spleen and I always ask him. When I go with him to the doctors, I know what questions to ask thanks to people on here.

Take care,

Kathy

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