Feeling frustrated and angry (UPDATE POST# 9)

I was diagnosed about a year ago with ITP and a count of around 20.
Went through the God-awful bone marrow biopsy. Found to be producing
platelets in a sufficent amount but being destroyed by some part of my
immune system.At that time was told no lukemia. Cat scan showed normal
sized spleen but inlarged liver. Past history of hepatitus.
Treated with IVIG with no response. Treated with predisone for 4 weeks
with only a slight increase in platelets. Up to around 30. Played havoc
with my diabetis and had really high b/s readings.

Since then went to a watch and wait with a steady down trend of platlets
Down to 17 now but no sysmtems. Also have had a high reading on a protein
in my blood which might or might not be an indicator of cancer. Pet scan in May 2010 showed no cancer. Praise the Lord for that. I had a tumor removed from my lung 4yrs
ago with no reacurrance.

What is frustrating me now and freaking me out is they want to do another bone
marrow biopsy. I hate those the pain is awful. They said they want to see if
there is any pre-lukemia going on. What is that? You either have lukemia or not.
Am I right about that? And if you do aren't your red blood counts down??
All mine have been normal.


They are saying if my count gets as low as 10 they want to treat with a chemo
drug. I don't know what to think. I have such bad health anyway CHF, diabetis
treated with pills, asthma, allergies and COPD. I lived through a massive heart
attach 4 yrs ago that destroyed 2/3rds of my heart muscle only 1/3rd left and it
only working at 20%. So feel I need to be concerned about my body tolerating
the chemo.

Thanks for letting me vent.

I did the bone marrow biopsy a couple of months ago. I don't blame you for not wanting another one! They had to pull two different samples of something and I nearly broke the nurse who came in to hold my hand. My doctor offered some Valium, it didn't help me but maybe there is something that can help? I really really want to be sedated if I ever have to do it again

I really hope that you hear some good news because it sounds like you could really use some.

The very first one I had done at my local hospital was agony because they didn't use pain relieve - apart from a doctors hand that is.

I had wised up by the time I transferred to another hospital and kind of refused - not really knowing what I was saying. A promise of being home 4 days earlier didn't bother me as used to hospitals as a child with hole-in-heart. They had to think a bit harder and they came up with pain relieve. Some kind of gas that I breathed in and I didn't feel a thing!! I wouldn't lie to anyone about it. It was soooo easy.

But am in the UK and we don't have to think about Insurance etc. I don't know what it was I had but I know it really worked and I didn't have any side effects. May be you could ask them about something that will help for I really didn't feel anything - such a contrast of the earlier one. Hope to have helped - and sorry to read of your health in general

Ps
They do a series of tests to rule out other conditions like Luekaemia because low platelets can be a result of a whole host of diseases and dissorders. Painful Very painful I know but it is kind of better to be safe rather than sorry later on if they discover something that they could have seen earlier. I know the pain is excrutiating but compared to Luekaemia etc, itself its over in a flash and they can rule it out. They always repeat it at a later date because of the scientific nature medicine is. If results change they will want to know why. If results stay the same they work on that I guess. Half an hours worth of pain is better than mistreating something. I hope you get the pain killers sorted out.

I didn't think the BMB was that bad. I didn't have any meds.

Yes, there is such a thing as pre-leukemia:

www.leukemia-web.org/mds-myelodysplastic-syndrome.htm

It sounds like you have a lot of medical issues and I understand the fear of chemo. Sometimes it's not as bad as it sounds though. Some chemo treatments don't have the horrible side effects that you hear about. It would be a good idea to discuss that with your doctor - maybe he can alleviate some of your fears.

hello there and welcome to the family. i can totaly undestand where you are comming from. been there and done that myself and still am. while i dont have the extent of your medical issues i am also diabetic and the steriods were awful.finaly told them where they could stick em, i mean they really werent even working. to make a long story short i am on the low-dose chemo drug cytoxin. the only side effect so far is a bit of nausea but they give me zofrin for that and it works pretty good. still to soon to tell if it is making any difference but so far it looks promising. they are also using a drug called N-plate along with it. i hope this has helped. sometimes just knowing you are not alone can be a big help. never worry about sharing here. we are here for each other and some times a good vent/rave can be so stress relieving. Kay

I've only had one bone marrow aspiration, and it wasn't fun, but it you put it into perspective, it is tolerable. I was able to do that because a friend who DID have leukemia told me that her aspiration felt "like a good kick in the pants." At least it doesn't go on and on--

I have had 3 bone marrow biopsies and I have been knocked out every time and don't regret being knocked out at all.

I understand how you feel. I chickened out of my BMB two years ago. When I talked to my hemo about the BMB we went through all my bloodwork together and everything (except my platelets) was perfectly normal. Thank goodness!

If something else is being flagged in your bloodwork, you shouldn't ignore it. Having the BMB may catch a problem in the early stages and potentially save your life.

BMB completed with less pain than before. Dr positioned me on my side instead
of my stomach. It really helped. Biopsy showed nothing different than the one
taken a year ago.I am making sufficient platelets. Still have one elevated protien
in my blood. My platlets were 15 so they gave me a platelet transfusion. Now a couple
of weeks later back down to 15 and I had another transfusion yesterday. I have an appointment to met with Dr. Tuesday to decide on an other plan of treatment now.

Well my husband is going in the hospital for major surgery on Weds.13th so cant
be anything that will make me sick. He will be in a week to 10 days with a couple
of those in intensive care. Exspect to put a lot of miles on the truck as it is a
round trip of 50 miles. When it rains it pours.

I'm glad for you that the BMB wasn't as bad as you expected. I didn't think it was all that bad either, nothing I'd volunteer for, but managable. I'll be praying for you and your husband. I can relate to the when it rains it pours perception. But I also have seen beautiful things after the rain. Stay Strong!