Getting Platelets side effects?

Amber,

My dr recommended me to have Vincristine too. I posted here around May asking for opinions since after doing some research, Vincristine scares the crap out of me. After reading a couple of feedback, it confirms my gut feeling about it (that it's not for me)...that's why I declined it, begged to tried Promacta.

Please share your experiences with Vincristine. I am very interested this treatment option.

Slammed - I wouldn't tell you to go AMA. I am saying that proper precautions should be taken to avoid adverse reactions to the platelet transfusions. I'd question the doctor about that and about the necessity of the transfusions. How are your symptoms when counts are low? Do you respond to any treatments in a timely manner? Since people can become refractory to transfusions, you'd want to save them for a time when you really need it.[/quote]

Sandi,

My dr always makes me go to the hospital if I'm below 10k. I believe the lowest I ever got was 3k. With 3k, I would get bruises, petechiae on my chest/back, maybe 1 blood blister, and I would get black dots on my tongue (it's been a very long time since I had the blood blister and black dots on my tongue) I think my body is adapting having low platelets.

I response to platelet transfusions and steriods very fast...it will only take me about an hour or so later to be over 20k in order to go be discharged...if not, my dr will make me stay.

Slammed as of now no problem with Vincristine, going to get another push on Thursday with the Rituxan. My arm was a little sore but I was told to ice it and its good. They gave me an RX for nausea, just in case but so far I'm good.

My counts today were 7k so I have an outstanding appointment with the infusion center daily for CBC and if lower than 10k (platelets). It seems with the 4mg dex daily with the platelets my counts go up. I didn't have platelets yesterday and now i'm at 7k yesterday 15k.

Amber,

Wow, I just re-read your post, you're getting Vincristine and Rituxan treatments at the same time?!!! How do you know which one is working? I don't know if my insurance will approve for both treatments at the same time. I didn't have any side effects from Rituxan. But with Vincristine, my dr told me to expect to lose my hair and nerve endings on my fingers and toes...weakness in the legs where I might be able to walk. I'm a runner, and I just can't imagine not being able to exercise.

I have neuropathy due to Lupus and I can tell you, it's not fun. I am losing sensation in my feet so I lose my balance a lot. I often lose sensation in my hands; it usually comes back but there will be a time when it won't. A simple case of shingles affected the nerve in my left hand and since it was already inflamed, it affected the muscle and I lost the use of my left hand for months. I had no fine motor skills and couldn't button clothes or any simple thing like that.

I have no control over this, can't make it stop no matter what meds I take. I would not voluntarily use a drug that could cause this because once it's gone, it's gone.

Vincristine you may lose your hair ( it will come back) and the nerve endings is just temporarily. It's more tinkles like they are a sleep then it comes back.

It's not always temporary. There were one or two people here years ago who ended up with permanent neuropathy due to Vincristine. Just be aware that it can happen. Sometimes it's very painful.

Yeah, side effects are with every medication. If people just look at side effects they would never take anything. At least I would never take anything.

Just be careful, Amber. It's one thing to have side effects, but when they damage your body permanently, it's not worth it. You're used to side effects that end when you quit the drug. That isn't always the case and you end up living with it for the rest of your life.

That is why I make notes and let the doctor know about them ASAP so we can either change medications or lower the dose. I tell my doctors and nurses every little thing that happens and it may not even be related to the medications. But the make notes as well as I do, I have a blog that I keep up with everything on and it helps with medications and counts. If I don't keep up with everything from medications too side effects too how I feel no one will. You have to be your own patient advocate.

I am a huge advocate for myself. I sometimes have frustrated doctors because I don't go along with everything they suggest. I've had side effects hit me from behind and never saw them coming. I've gone to bed just fine and woke up the next day with something unexpected. After ending up with damage a few times, I put an end to the harsher drugs and get by on the minimum. In time, the more drugs you take, the worse the side effects get and in the end, you realize that you're worse off now than you were before. I've turned down four infusion-type meds because I felt that the risk was worse than the benefit.

My Rheumatologist wanted me to try Methotrexate about two years ago. It is a weekly self-injected chemo. I read so many success stories about people who had much better lives because of that drug and they had no side effects. I wasn't so lucky. I kept getting bronchitis and pneumonia (immunosuppression) and due to that and the drug itself, ended up with lung damage. I thought I had shortness of breath from bronchitis that never seemed to go away, but after seeing a Pulmonologist, he concluded it was due to the drug (which can cause lung damage). I had to stop using it. It's hard to go up a flight of stairs or walk through a park. It stinks when you're not nearly old enough to have such problems and your mind wants to do things that your body can't do. I'd hate to see you end up like that.

With the meds you are on, I would want to be able to expect more than a few months of remission. If that's not possible, it's not worth it. All I'm saying is, at the first sign of trouble, bail out.

I am curious to think where I would be if I had never treated?

I am now holding at the platelet count I was at when first diagnosed 30K-40K with out treatment. However the side effects I have are permanent and no fun. I have neuropathy in both feet and hands, I have tendon damage from high dose prednisone in my ankles and have to wear special boots to bed so I can walk in the morning. The pain in my hips is not going away etc......

So what I am saying - treating can sometimes be worse than not treating (each person needs to decide for them selves), but had I known then what I know now - I would have waited much longer before ever treating!!

The doctor wanted me to stay on N-Plate and I said no because of the side effects. "Can we try a couple of more weeks?" NO! I'm the one having to deal with the headaches and joint pain. No more headaches, other than my normal pressure ones from the weather. And yes if I start have problems the medications will stop.

I would be happy at 30-50k and told my doctor that as well. Even above 20k.... I'll eat dirt if it will help. Today's count 4k.

www.itpsupport.org.uk/american/%209.%20C...Die%20from%20ITP.pdf

Amber did you see this article? It might help ease your fear of low platelets..My son was 0-3k for TEN months, It is so scary and I know how you feel just wanting to get above 20.

One thing that really sticks out though..
The situation may be somewhat different in adults, who are more likely to have other conditions
that contribute to fatal bleeding, whose disease is longstanding, or who suffer from fatal
consequences of long-term treatment of ITP. Hence, some adults die ‘with’ ITP rather than
necessarily ‘from’ ITP. Good data are hard to come by, but it seems that death due to hemorrhage
in adults with ITP is, like in children, extremely rare. Many hematologists have never experienced
fatal ITP in their practice.

Sandi wrote: I have neuropathy due to Lupus and I can tell you, it's not fun. I am losing sensation in my feet so I lose my balance a lot.

Saying neuropathy is not fun is an understatement :blink:

My PN is --- wait for it: idiopathic !

It always scares me when someone goes on vincristine because of this side effect - one can't say it will go away once med is withdrawn, and that includes someone in the medical field, they don't know!

However symptoms are different for people - my oh so enjoyable neuropathy pain is 27/7.


Sandi do you remember me telling you that acupuncture gave back some [only some] of the feeling in my feet? If you haven't you should check it out!

Crystal website will not come up

www.itpsupport.org.uk/american/%209.%20Can%20I%20Die%20from%20ITP.pdf

this is the article Crystal was linking

Yes, I remember, Melinda. It's on the list. My medical bills are piling up, so I have to get those paid down first.

Amber, here's the thing. You weren't willing to live with side effects that went away when treatment was stopped, even though the drug was working for you. It will be even worse living with side effects that don't go away, whether the treatment works or not.

Side effects are tricky. They can show up slowly right away, they can hit you hard suddenly, or they can take months or years to show up. They can be cumulative, permanent and destructive. You don't realize how much you appreciate your body until you lose some of it. :huh:

There are a few on my neuropathy group who ended up with PN after chemo - theirs has not gone away.

My dad has permanent neuropathy from chemotherapy. VERY debilitating and painful.

The N-plate wasn't really working for me, and the more I got the drug and the higher the dose went the worse the side effects. The doctor didn't think the medication was going to work either way.

I have had two Platelet transfusions. First one was about 5 years ago the other was a few days ago. Both times I was at 4-5k. No side effects. I agreed to this as my fear is internal bleeding at this level and a Platelet transfusion is a quick way to increase counts. Opinions on this vary from person to person and Dr to Dr. The first transfusion did not last long and I am hoping this transfuaion hangs in there. The Platelets that were ordered for me were given to another patient that needed them more than I did, so another batch was ordered. The saying "there is a reason why certin things happen" I am wondering if there was a reason for this. Maybe the batch that was initially ordered for me were not the ones that would hang in there. Time will tell. My goal is to not let things bother me, which I feel effects my counts.

I'm positive every morning even when I found out my counts are 1 or 2k. The nurses are always like you have a wonderful out look. And when I went for 1 to 2k I was happy its a lot better than 1 its double....LOL. Just as longs as I am not bleeding I'm good, don't like the blood blister in the month when they are low but hey that is why there is ice. Hoping the change of dex to pred will make a difference since it has helped in the past. But we will find out at 7:45 this morning...

I've been on Pred since 9/26/13 and no change in counts, yesterday 2k today 1k. Just hoping that the Rituxan and Vin start to kick in soon. But it will be my forth week on Wednesday. Still trying to keep my head up but its been really hard the last couple of days and it doesn't help that one of the cars decided to take dump on us, getting it towed after work. Just glad my folks have an extra car we can use. Oh and my husband is sick, thinking it is food poisoning, he vomited when he got to work and came straight home. He is trying to sleep and rest it off, just glad he got home ok since I was stuck in the infusion center when this all happened.

Counts at 6k today something is kicking.... I will take it.. "may the force be with you and may the odds be ever in your favor " love both quotes..........

Had treatment on Wednesday 13K then, Thursday 2K, Friday 4k and Saturday 5k. Going this morning for CBC and we will see what it comes too. Lowering the dose on Pred.

yesterday 19k and today 4k.... on 60mg pred

Amber,

Just curious, with counts so low, are you still getting platelet transfusions? I'm assuming you're not hospitalize right?

I feel so bad for you that you can't get your counts up...