Dale_Ray Low Platelet subject

Dale, I too have a Hemot Dr. who has set my platelet drop limit and will suggest to my Gasto Dr to reduce or stop treatment with a platelet count of 50 or lower. His reasoning was the same as your Drs. (the brain could hemorage).
I got scared when my platelets dropped to 68 a few weeks ago and begged for advise (from both Drs.) as to what I could do to increase them.  I was told there was nothing I could do.  I was addiment about them not stopping my treatment no matter what and it was suggested that I get a second opinion if I did not like the answers both these Drs. were giving me.
Even though I wasn't at there cut off point I did not want to chance getting there and was willing to try anything but they gave me nothing to go on. So I did seek a second opinion.
After many calls trying to find a liver specialist I was amazed when a Gastro Dr. actually answered the phone himself and spoke to me on the subject for about 10 minutes.  I still think about that call with amazment as I have never call a Drs. office and had the Dr. pick up the phone.  It was for me a blessing.  
Here is what he said to me:

1st, he agreed that the limit they set was a realistic one but he also said if it comes down to the point that they were going to reduce or stop tx that there are Drs. out there who will let you go as low as 30 and I could seek one but that is can be dangerous.

Reaching max characters please read my next comments to see what really helped me.

[Mister beagle bailey]

There are rescue drugs for low WBC, I believe NYgirl has been on it.  Check with her before you go any further.

Beagle

[Holly44]

2nd, before I got off the phone with him he said let me tell you a little trick to try to help increase your platelets.

He said the next time you get your cbc done exert some energy before they take your blood and this should increase your platelets.

Now let me tell you I had not exerted energy in a while because I did not have any to exert. The next day when I went to get my cbc drawn I parked way out in the left 40 and instead of taking the elevator I took the stairs ( about 3 flgts ).
It worked, my platelets went up to 98.

My husband was worried that I could be putting myself in danger as I may be tricking the cbc but I assured him if it works then I would just have to force myself no matter what to be more active.  As I said it did work and since then I have been more active and although my platelets still travel up and down they have never been that low since.

It worked and continues to work for me.  My platelets were 107 yesterday.  

To this day I still wonder about that Dr answering his own phone....hummmm...maybe a higher power at work here.... I choose to believe so.

Hope this helps.

V/R  
Holly

[Holly44]

I'm taking the rescue drugs when needed and I'm maintaining. I was posting to hopefully help Dale_Ray with the platelet issue as there are no rescue drugs for them.
Thank you though.

[Dale_Ray]

That is fantastic news Holly. Let's see a doctor answers the phone out of the blue and takes time to help you, strange in itself. I have the same problem and due to your experience you have the information for me. A lot of people would call it coincidence but I'm not a  big believer in things happening by chance. I'll start getting more (what am I saying) any exercise that I can and I'll jog on the interstate to the docs office. I just want the platelets to go up to make him happy and let the treatment go forward. Thank you so much for taking the time to tell me this. It will make for a better weekend just knowing it might work. Thanks again, Dale

[NYgirl]

No so far it's only been my hemo - no WBC problem....but thanks for trying to give me another issue to deal with! My Muchausen's wasn't acting up enough and I wasn't getting any attention hahahahahahaha.

[Holly44]

Best of luck to you.  Please let me know if it works for you like it did for me.  Your in my thoughts.
V/R
Holly

[Alady1620]

Great advice for Dale.  Thank you for sharing.

[GoofyDad]

FWIW, My Doc is not a fan of the Neumega. They've only used it in the clinic a couple times when they had patients they *really* didn't want to dose reduce. In most cases they'd rather watch platelets drop to about 25, then dose reduce as needed to hold above 25.

At one point mine were plumetting in that direction before leveling at 40 or so.

[Bill1954]

The drug Neumega, also known generically as oprelvekin, is considered a rescue Rx labeled for severe chemotherapy-induced thrombocytopenia (platelet deficiency). Here is a link for product label info--

http://www.accessdata.fda.gov/scripts/cder/onctools/labels.cfm?GN=Oprelvekin

Take a look at this information, and consider printing a copy for your doctor

[Bill1954]

Oops, I meant to say Epogen nor Neupogen, not Epogen nor Procrit!

[Dale_Ray]

Hopefully I will be talking to the doctor in the next few minutes about this weeks blood work. I am on Nupogen for my whites and I am goint to ask him about the Neumega for the platelets. Holly told me this morning she had the same problem and was told to exert herself prior to bloodwork and platelets would come up. She did and it worked. My doctor is a hemotologist and a gastro too. He is very cautious at times so I hope with this new information he will not pull me from treatment. I'm clear and I want to finish this thing out. I'll post the results. Dale

[Dale_Ray]

Mine were at 58 last week and haven't heard from doctors office yet today but I don't feel any worse with platelets down. I'm feeling that funky chicken thing from the white count being down but nothing unusual. PS. I have been seeing little shooting stars in my vision for a few days. lIke looking into the stars at night but on the wall in my office. I think I'm probably a nut job at this point. Goofydale

[tulsatime]

Thanks everyone. I will try to exercise before blood work this time when I start TX again. My platelets were around 50 last treatment. Then I bought some vitamin K in pill form and my platelets stayed around 70 the rest of TX. Don't know if it was the vitamin K or that my liver was doing better but it was working what ever it was. take care