Platelet infusions more frequent, should we be worried?

[Eva's daughter]

Hi all,

Its been a while since I posted here. My Mum has two days to go with her 3rd cycle of Azacitidine and while she is coping ok, she gets extremely tired and her platelets have been dropping to 6 usually a week after treatment.

She had 2 platelet infusions in 10 days after the last cycle and now she is in the middle of her next injection cycle and is needing an infusion straight away.

Has anyone else experienced this? Will it get better? I've heard so many horror stories about becoming platelet infusion dependent.

We have a meeting on the 7th of Feb to see if they have found her a donor yet. Cross your fingers for us!

Thanks everyone,

Emma

[Care.]

Hello Emma,

Same thing is happening to my Dad lately. January 7th his CBC was: WBC 1.5, ANC 0.8, RBC 1.77, HGB 5.6, HCT 17.2, and Platelets 8. Four units of blood and one unit of platelets brought his counts to WBC 1.5, ANC 0.4, RBC 2.66, HGB 8.5, HCT 24, and Platelets 28. By 11 days later, his CBC showed that the platelets dipped again (to 9), but today (1/23), his CBC shows that his platelets jumped to 30. He finished his previous cycle of Vidaza on 12/23, and just started it again today (5-weeks in between the cycles this time, due to his ANC and extreme fatigue.) October, November and December, his platelets hovered in the 30's and 40's. There was no explanation for the dip down to 8 earlier this month, but two weeks after that dip, they're working their way back up. Hope that helps.

[Eva's daughter]

Hi Care, wow it sounds like we are in a similar boat. It's all rather stressful isn't it?

How long has your dad been in the vidaza overall?

All the best,

Emma

[Care.]

Hello Emma,

My Dad was first diagnosed with MDS in November 2015. He did only 4 cycles of Vidaza (December through March) and had a partial response (HGB and Platelets only), where he felt better and his HGB and Platelets continued to slowly increase into normal ranges from April through June. His BMB's in November 2015 and April 2016 both showed 5% blasts. (His WBC's and ANC remained low ever since being knocked down by the very first cycle of Vidaza.) By the end of June 2016, his platelets began to rapidly decrease. By mid-August his counts were RBC 2.27, HGB 7.5, HCT 22.5 and Platelets 82. He started Vidaza again September 12, with one 7-treatment (5,2,2) cycle, but could only tolerate 5-treatment cycles for October, November and December so far. Yesterday (1/23) he started his 9th (overall) cycle of Vidaza and the Oncologist is only committing to 5 days in this cycle. But my Dad's experience in his 7th cycle is very similar to your Mum's third cycle, where he required 2 units of platelets + 4 units of packed RBC's immediately following the cycle (finished the cycle on Friday and counts plummeted by Monday). So it wasn't until yesterday that I am seeing his ability to produce platelets is rebounding.

I have been tracking all of his CBC's since day 1. Going into yesterday, I was completely surprised that his HGB and Platelets looked as good as they did. Since September 2016, my Dad is heavily reliant on transfusions (2-3 units of packed RBC's/week + 1 unit of platelets/month). Because of yesterday's jump in counts, I am hopeful that these 9th and 10th cycles of Vidaza will show some improvement and put him on a good path again. However, I have to admit that I think stopping Vidaza after just 4 treatments, and when none of his counts were in the normal range at that time, was not the best decision; and am further discouraged by my Dad's inability to tolerate 7-treatment cycles and having to delay subsequent cycles an additional 1 to 2 weeks, because he's not rebounding within the normal 28-day cycle.

I sure hope the Vidaza helps your Mum to begin making platelets again, and that her WBC's and ANC remain strong going into her anticipated transplant!!

Care.