Low Platelets - No Chemo.
Comments
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oh Vicki
im so sorry to hear of your low platelets.i have been on xeloda+avastin my chemo was put on hold for two months because of low platelet issues.i now have a condition called itp.they will not give me a platelet transfusion unless they drop below 20,000.in the last month i have been on the xeloda only and wednesday they are going to try a drug called rituxin(sp)to get my platelets up i had my platelets checked 4 days ago and they were 51,000.i know how you are feeling.if you need to talk just pm me.good luck to you....Godbless...johnnybegood0 -
so gladjohnnybegood said:oh Vicki
im so sorry to hear of your low platelets.i have been on xeloda+avastin my chemo was put on hold for two months because of low platelet issues.i now have a condition called itp.they will not give me a platelet transfusion unless they drop below 20,000.in the last month i have been on the xeloda only and wednesday they are going to try a drug called rituxin(sp)to get my platelets up i had my platelets checked 4 days ago and they were 51,000.i know how you are feeling.if you need to talk just pm me.good luck to you....Godbless...johnnybegood
Vicki and Johnny I am so glad that you two have one another....
love to you both
mags0 -
So sorry to hear this...Imaglets said:so glad
Vicki and Johnny I am so glad that you two have one another....
love to you both
mags
So sorry to hear this...I have no good advice...my platelets don't go down, I have no clue why....I do take veggie grees drink, it's a powder (taste is gross) it's supposed to be full of good things. But, I don't know if that's why. At least you're still getting some chemo.0 -
Vicki
So sorry again. I know it must be frustrating. I haven't had that problem, my platelets run between 250,000 - 400,000. I wish I could lend you guys some of my extra. How are you feeling? How low were they this week? I get #8 next week and still getting full strength. Each week symptoms are progressively longer. Hope you're feeling ok.
Sandy0 -
Folic AcidMomof2plusteentwins said:Vicki
So sorry again. I know it must be frustrating. I haven't had that problem, my platelets run between 250,000 - 400,000. I wish I could lend you guys some of my extra. How are you feeling? How low were they this week? I get #8 next week and still getting full strength. Each week symptoms are progressively longer. Hope you're feeling ok.
Sandy
Thank you for the feedback everyone. I am going to buy some tonight. It's been defeating not being able to get chemo. I will try anything at this point.
Much love everyone!0 -
ITPjohnnybegood said:oh Vicki
im so sorry to hear of your low platelets.i have been on xeloda+avastin my chemo was put on hold for two months because of low platelet issues.i now have a condition called itp.they will not give me a platelet transfusion unless they drop below 20,000.in the last month i have been on the xeloda only and wednesday they are going to try a drug called rituxin(sp)to get my platelets up i had my platelets checked 4 days ago and they were 51,000.i know how you are feeling.if you need to talk just pm me.good luck to you....Godbless...johnnybegood
Hey J...I know ITP....got that one too in the early days of the fight...the oxy caused that one and my platelets have never recovered to really good levels.
On any given day, if I can wring out 80-82 out of 'em, I'm doing good...
Oxy cut my platelets in half with each infusion....with Folfiri, the platelet loss was much less and I was able to do chemo in the high 50's and low 60's....
And Vicki...Hi there:)
To answer your question, YES, my treatments were delayed and delayed and delayed...infusion times kept getting pushed back...a month became common...when it started getting 2-3 MONTHS in between treatment, we discontinued the treatment.
I was able to do CPT-11 or Camptosar with far less platelet loss than while on the oxy.
Last I recall, you were hovering somewhere in the 60's and your onc was still delaying...and I think you were doing Folfiri, where CPT-11 or the Camptosar is the main player.
Now, if you are still doing that and your platelet level is in the 60's, they could be authorizing your treatment. As I said, I did them in the 50's and 60's...and made all 12 treatments....every 2 weeks....without fail.
See, the problem with chemo is you've got to keep introducing it every 2-3 weeks as prescribed in order for the chemo to have the desired effect of busting up the cancer cell DNA at all of the various growth stages that those cells are at in your body.
Scattershootin' a cycle here....waiting a month....firing off another shotgun blast....waiting....this is not going to give the cancer the desired effects that we want to have the chemo to have.
In order for it to have the optimum effect, it must be delivered on a pretty regular basis, or the toxicity and side effects outweight the benefits you would hope to realize from doing the drug in the first place.
Consistency is the key....missing a week or even two sometimes is not a deal-breaker...but when the breaks begin to last longer than the treatments, we have to wonder what the effficacy of the treatment will be...and why the doc continues to push back...if they could legally administer the treatment, that is?
So, what you can do is ask the onc...
1. Find out what your current platelet count is.
2. If it sits in the 50K or 60K range, ask him why they won't order treatment.
(the rule is that they can delay treatment under 100K, but you can go lower)
(I did them in 50's and 60's...and so is JBG)
3. Ask them directly if it can be determined if you have ITP.
What is ITP?
Idiopathic thrombocytopenic purpura is a bleeding disorder in which the immune system destroys platelets, which are necessary for normal blood clotting. Persons with the disease have too few platelets in the blood.
ITP is sometimes called immune thrombocytopenic purpura.
Causes, incidence, and risk factors
ITP occurs when certain immune system cells produce antibodies against platelets. Platelets help your blood clot by clumping together to plug small holes in damaged blood vessels.
The antibodies attach to the platelets. The spleen destroys the platelets that carry the antibodies.
+++++++++++++++++++++
Now, you can have your spleen removed, and it's guaranteed to raise your platelet count...but I read that in the literature back when it was my turn...and told the onc I don't need the operation to prove what I already read in the medical literature.
But, this might be an option that you could also discuss - the risks that might be associated or gained from this procedure.
It would be good for you to know if you have this...
And now back to JBG...
RITUXIN...this triggered another memory for me...this might be a good avenue for you...and I can't wait to hear if it worked for you. Way back when it started for me, I had to sign myself up, and my onc, and our cancer clinic up for this drug (it was just being introduced) so that my onc could legally adminster the drug to me...this would have been a first for the clinic then...
But, things went sideways with my care then and I left their practice and never got the opportunity to take that drug...though I remember it being touted as something that could boost platelet levels...
I hope that this works, J...because, there are very few things we can do for platelets, outside of the transfusion, and apparently that is not a regular solution to the problem.
Good luck to both you ladies:)
-Craig0 -
I'm having the same problems girls, I'm in the sixties but doc .johnnybegood said:oh Vicki
im so sorry to hear of your low platelets.i have been on xeloda+avastin my chemo was put on hold for two months because of low platelet issues.i now have a condition called itp.they will not give me a platelet transfusion unless they drop below 20,000.in the last month i have been on the xeloda only and wednesday they are going to try a drug called rituxin(sp)to get my platelets up i had my platelets checked 4 days ago and they were 51,000.i know how you are feeling.if you need to talk just pm me.good luck to you....Godbless...johnnybegood
Is not stoping chemo since it is so slow in me to rise my platelets,the good thing is that it seems stabilised in this 60,s and it doesn't drop from there!
Hugs girls!0 -
My platelets are ok...notinVickilg said:Folic Acid
Thank you for the feedback everyone. I am going to buy some tonight. It's been defeating not being able to get chemo. I will try anything at this point.
Much love everyone!
My platelets are ok...notin the high numbers. I will keep you in my thoughts and prayers that you can get back to your chemo plan without further delay.
Alex0 -
low platelets and ITP history
I was first diagnosed with uterine cancer in 2001. it came back full force in 2009 and moved to my colon. Had radiation/chemo and was 4 years in remission. it came back in 2013. started chemo -- did 10 sessions, but now cancer is resisting the chemo. so I was going to try another chemo cocktail -- but for some reason my platelets kept dropping -- i have been 5 weeks without chemo. then my doctor -- remembered that I had ITP -- and had a spleenectomy in 2002... My plateles have been at normal levels until now.. so now he suspects my itp has returned -- my liver could now be destroying my platelets... so we are trying prednisone -- the treatment I was on before the splenectomy. I had ITP for 20 years before the splenectomy. I've also been reading online -- that either spleen tissue could still be in my system or an "appendage" spleen may be present and destroying my platelets... This is crazy.
If prednisone doesn't work, then I will have to have a bone marrow biopsy to see if the chemo has destroyed my bone marrow..... just wanted to share what I'm going through in case anyone else is going through what I am going through
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Thanks for the share and the updateweezey610 said:low platelets and ITP history
I was first diagnosed with uterine cancer in 2001. it came back full force in 2009 and moved to my colon. Had radiation/chemo and was 4 years in remission. it came back in 2013. started chemo -- did 10 sessions, but now cancer is resisting the chemo. so I was going to try another chemo cocktail -- but for some reason my platelets kept dropping -- i have been 5 weeks without chemo. then my doctor -- remembered that I had ITP -- and had a spleenectomy in 2002... My plateles have been at normal levels until now.. so now he suspects my itp has returned -- my liver could now be destroying my platelets... so we are trying prednisone -- the treatment I was on before the splenectomy. I had ITP for 20 years before the splenectomy. I've also been reading online -- that either spleen tissue could still be in my system or an "appendage" spleen may be present and destroying my platelets... This is crazy.
If prednisone doesn't work, then I will have to have a bone marrow biopsy to see if the chemo has destroyed my bone marrow..... just wanted to share what I'm going through in case anyone else is going through what I am going through
I read your post with interest, as my son has had his chemo delayed due to a low platelet count. After some testing, he's also taking prednisone to bring up the count enough to do the chemo.
Please keep us up to date on your progress.
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