platelet treatment

[bety]

Anyone receiving medical treatment for low platelets?
If yes, please include details. So far, none of the alternative therapies have been effective for my husband. I would appreciate any suggestions you might have.

All the best. bety

[jaxem]

bety
i think all who have undergone any treatment for leukemia/mds have experienced low counts for platelets, wbc’s and rbc’s. my wife gets transfused about once/week for platelets until her body rebounds and begins to manufacture her own. she gets a small amount of benadryl & usually is ok afterwards. the last 2 tx’s, she’s had an allergic reaction (hives & swelling of an eye) which was reduced with some more benadryl. she’ll drop to a low of 15 & up to around 60-70 after tx.

[bety]

Dear Jack,
Your response was very helpful.
My husband, lately, has been getting 1-2 units prbc’s and about 5 units of plts every two weeks. Just before the tx’s, he tends to be quite forgetful, very tired and very sleepy. The memory problems are very frightening for all of us. .
Have any of the forum members been seen by a neurologist, familiar with mds, in the NYC area?
Is there any treatment?
Often, I worry that I may be neglecting possible treatments that might be effective. I am open to any and all suggestions.
All the best, bety

[Neil]

Hi Bety,
There are very limited platelet treatments at this time.
Transfusions help for quite a while.
Low dose prednisone, Neumega and Donagel have helped a few temporarily.
Lonafarnib is being trialed on MDS patients who are platelet TX dependent at Georgetown Univ. Too early for any conclusions, but you might want to phone Dr. Ekatherine Asatiani at 202-444-3958 for more info

[Bkwits]

Hi Bety,
My husband was refractory to plt txs from the first one. They tried matched plts and just about everything, including IVIG. IVIG is expensive, was done in the hospital so ins. paid for it, but it didn’t help Joe’s plt count. It went up only slightly. I understand that if it works for an individual, it raises his or her plts quite a lot.
Barb

[bety]

Jack, Neil, Barb,
Thank you for your input! I will try to explore your suggestions and try to profit from your experience.
So far, Ed’s plt txs help for about a week or so. The fear is that he can develop antibodies against the plts, as I understand it. Apparently, this can be very serious.
Unfortunately, Ed’s Hematologist is away for 3-4 weeks and his covering H’s are not very familiar with his particular case. This next week, we should know how his blood counts are doing and if the probable txs will give him a boost, physically and mentally.
Thank goodness that I have you all to lean on. I have learned more from the forum than reading about mds on the internet.
All the best, bety

[Neil]

Hi Bety,
Am assuming he is getting irradiated/filtered platelets. If not insist on them. Getting rid of the white cells will help eliminate antibodies.
Try to get single donor platelets—if more than one bag is used. They work better and last a bit longer than mixed donor.

[bety]

Hi Neil,
I think that Ed’s plts are irradiated, but I have to check if they are filtered! Initially, he was not getting single donor plts, but now he is (after I requested it).
Today, I checked the side effects of some of the supplements he has been taking. I was surprised to discover that many of them affect bleeding (ginger, turmeric, hawthorne berries,bromelain etc). Even blueberries are considered to encourage bleeding. On the other hand, these supplements are supposed to help treat mds. I feel like I am in a catch 22 situation. I just do not want to do any harm.
Thank you for your suggestions.
All the best, bety

[shirlsgirl]

Hi Bety,

Has your husband’s physician mentioned cyclosporin?…it really helped my mom when her platelets were low.

Take care,

Jody

[bety]

Dear Jody,
Unfortunately, our hematologist has been away for the past 3-4 weeks. Hopefully, he will be back when we are scheduled to see him…in a couple of weeks. I certainly will ask him about cyclosporin when he returns. I am getting to the point where I am a little desperate. You all in the forum have kept me going.
Thank you for your input. I very much appreciate it. All the best, bety

[chuckk333]

Betty,
I have had low platelets, in the 50-60K range. I started trying taking 1/2 fresh pineapple, juiced in a juice extractor each day, and my platelets have now been hovering about 80K. It might be worth a try.

Chuck

[bety]

Dear Chuck,
Thank you for your suggestion regarding pineapple. Ed gets a very sore mouth from the pineapple juice and unfortunately, cannot seem to tolerate it.

Have you heard of bromelain? It is an ingredient in pineapple. I just started giving him one capsule per day in the hopes that it may help. Right now his platelets are only 20, hgb 6.2 and his wbc is only 0.5 (up from 0.3 a couple of weeks ago). Your suggestion and interest are very much appreciated.
———————-
Husband 87 yrs. Rars. tx dependent for prbc and plts about every 2-3 weeks. Up until his last hospitalization a couple of months ago for uncontrollable nosebleeds, he was quite energetic. Now, he is usually very tired and sleeps or dozes much of the time. He has just been restarted on aranesp. Ferritin level almost 4000. Stopped Exjade temporarily after last nosebleed.
All the best, bety

[Jack_dup1]

I also juice pineapple when my platelet drop below 80, last week they were 40, started juicing and counts went to 80. I alway drink it down fast and then rinse well to prevent mouth sores.
Jack

[bety]

Dear Jack,
Your idea about drinking pineapple juice fast and then rinsing well sounds great. We will certainly try it.
Yesterday, Ed awakened with a moderately serious nosebleed. Knowing that his plts count was only 20 or even less, I contacted our hematologist. He arranged for Ed to get one bag of plts stat at the blood bank. Fortunately, we got there in time to get the tx before closing. He probably would have ended up in ER or the hospital had he not had the tx.
If the pineapple juice works, I will so very grateful for your suggestions and that of the other forum members.
All the best, bety

[bety]

Dear H,
I am not trained to use the internet and lost your private message as well as my response. I want you to know how grateful I am regarding your warning about the possible deleterious side effects of bromelain on plts. I researched it on the web and realize that you may have saved us from further nosebleeds as well as a great deal of heartache. I very much appreciate your warning. Thanks again, all the best, bety

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