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-   -   Kadcyla and low platelets - need your advice please (https://her2support.org/vbulletin/showthread.php?t=64950)

toothfilla 06-01-2016 08:41 AM

Kadcyla and low platelets - need your advice please
 
Hello everyone,

My mother started Kadcyla a couple months ago.
After her first dosage the platelets were fine, but after the second dosage they dropped way down to 10k. She was given a transfusion and according to the kadcyla rx info, the doc had her wait until she returned to above 75k to give the next dosage. Unfortunately, that meant that instead of getting her dosage 3 weeks later, she had to wait 6 weeks and they did a dose reduction.

After the dose reduction, she only dipped to 35k at 8-9 days (nadir) and we just checked today and she is still only at 40k. Next dose would be normally scheduled for this Saturday (3 weeks) but now we are trying to figure out what to do.

My mother is being treated overseas and she is one of the first there to get Kadcyla so the docs don't have a lot of experience with it.

I'm hoping someone in a similar situation could chime in on what they did and what their doc modified.

Should we:

1. Give another platelet transfusion (and perhaps give it each time?) until the number goes above 75k? Her doc currently doesn't want to give transfusions and said it should be allowed to rise on its own.

2. Wait until the count is 75k without administering any further platelet transfusions?

3. Do something else?

I really hope some Kadcyla patients are in a similar situation and can chime in.

waterdreamer 06-01-2016 12:39 PM

Re: Kadcyla and low platelets - need your advice please
 
The best thing that I have found for low platelets is Papaya Leaf Tea. I drink at least 2 cups of Papaya Leaf Tea a day, and despite it's bitter taste, the increase in platelets makes it worthwhile. If you can get fresh papaya leaves, that is best. You take several leaves , cut them up finely like lettuce (discard the veins - white part) and boil in 2 quarts of water. Let it boil down to 1 quart and drink a cup a day. It tastes really bad, so she could add a bit of pure pomegranate juice (also good for platelets). If you do not have access to fresh leaves, then you can get them on Amazon. I buy the bulk packet and use 2 tbsp per cup of tea (you need a strainer).

Spirulina is another good super food to add. I take 1TBSP in a protein shake daily. I also drink a green drink (freshly juiced - no fruit) 1 - 2 times a day.

She should avoid all Omega-3's - cod liver oil, flax seed oil, flax seed etc. They are really good for us, but not when you are trying to raise your platelet count.

I also avoid ginger and tumeric, as they too, lower platelets. They are good for nausea and fighting Her2+ cancer respectively, but again not so good for platelet counts.

Good luck with raising her platelets and keep us updated.
Kadcyla is an amazing drug.
Fern

toothfilla 06-02-2016 06:39 AM

Re: Kadcyla and low platelets - need your advice please
 
Hi Fern,

Thanks for your reply.
Surprising enough, she just started papaya leaf extract for this very matter. They use it in dengue fever patients so the thought process was the same.

My only question is it better to let her naturally get back up above 75k and delay the dose for another few weeks? Or give her a boost with a transfusion so she can get the dose sooner. I'm just worried about her having to wait 5-6 weeks between doses instead of the recommended 3 week interval.

donocco 06-02-2016 08:00 AM

Re: Kadcyla and low platelets - need your advice please
 
Ill research this a bit because its best not to shoot from the hip.

There is an FDA approved drug that can be used to raise platelets. I believe it is Interleukin-11 (there are a lot of interleukins) and the brand name is Neumega.
It is injected under the skin

Paul

donocco 06-02-2016 10:24 AM

Re: Kadcyla and low platelets - need your advice please
 
It is Neumega. The generic name is Oprelvekin. The dose is 50 microgram per kilogram.
The main side effect is fluid retention or edema. It can cause GI side effects and oral yeast infections also.

Paul

SoCalGal 06-02-2016 12:28 PM

Re: Kadcyla and low platelets - need your advice please
 
Have you looked into Neupogen or Neulasta?
https://www.neulasta.com
http://www.neupogenhcp.com

waterdreamer 06-03-2016 06:56 PM

Re: Kadcyla and low platelets - need your advice please
 
I have found the papaya leaf tea works great. I would get an infusion, if the treatments have to be stretched out, longer than 4 weeks apart. Please keep in mind that Kadcyla does not cross the BBB and she should do an MRI every 3 months.

Good luck with these tough decisions.

Best
Fern

Mtngrl 06-03-2016 07:48 PM

Re: Kadcyla and low platelets - need your advice please
 
I'm wondering where the 75,000 threshold came from. I must admit I don't remember what my platelet numbers were when I was last on Kadcyla, but I think they were lower than that. I wasn't having problems with bleeding or bruising, and I wasn't planning to get a transplant, so my oncologist didn't worry overmuch. I never had a dose withheld.

waterdreamer 06-03-2016 09:57 PM

Re: Kadcyla and low platelets - need your advice please
 
Amy is right. I recently did a Kadcyla infusion and my platelets were at 63 000. My onc said it was my call, so I went ahead, as I felt good enough to do so. As Amy mentioned no bruising, but I was having a bloody nose. The next treatment, they were in the low 80 000's that was after cutting out Omega 3's and drinking the Papaya Leaf tea.


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