Temodar and low blood counts

6 Posts | Page(s): 1 

Temodar and low blood counts

by Paulgd on Tue Apr 28, 2015 09:14 PM

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Hi All,

I started treatment for GBM at the begining of March with the standard treatment of 30 radiation sessions with Temodar over a 7 week period and after 4 weeks my platelets levels dropped so had to stop taking the Temodar. I was told that it could take 4 weeks for the platelets to recover. It now has been 5 weeks and they are still down and in the last 2 weeks the white blood cells and red blood cells have dropped too. They keep telling me that they should of recovered by now but not to worry, but I can't help worrying when they keep booking me in for more transfusions each week.

I was wondering if anyone else had a similar trouble and how long did it take for their blood levels to improve.

Thanks,

Paul

RE: Temodar and low blood counts

by yildizsungur on Tue Apr 28, 2015 09:57 PM

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On Nis 28, 2015 9:14 Paulgd wrote:

Hi All,

I started treatment for GBM at the begining of March with the standard treatment of 30 radiation sessions with Temodar over a 7 week period and after 4 weeks my platelets levels dropped so had to stop taking the Temodar. I was told that it could take 4 weeks for the platelets to recover. It now has been 5 weeks and they are still down and in the last 2 weeks the white blood cells and red blood cells have dropped too. They keep telling me that they should of recovered by now but not to worry, but I can't help worrying when they keep booking me in for more transfusions each week.

I was wondering if anyone else had a similar trouble and how long did it take for their blood levels to improve.

Thanks,

Paul

We had the same problem and it took a long time to recover. We even asked for a bone marrow biopsy and realized there was bone marrow loss because of temodar. The drs said maybe we would never get any kind of chemo meds again. I tried lots and lots of things to rise them but nothing worked quickly. They were increasing so slowly and months were passing through without any treatments. Finally I found the magical formula that worked to rise them like a jet. Now we are applying the below nutrition to keep plts, rbc, wbc in line.

1-Eat avocados every day. Start with one everyday for a week then eat least 1/2 They help the bone marrow to repair.

2-Eat at least a handful of raspberries every day (mom hates avocados so we blend them together and drink like a smoothy)

3-Drink a cup of fresh brewed lavender tea every day (just put a pinch of lavender into hot water and let it brew)

4-Every night put a dried date into a glass of water. Let it rest all night and drink the water in the morning. (no need to eat the date, it's optional)

5-Drink mother's milk if you can obtain off course. (A lactating friend is pumping and giving it to us every month. Mom drinks 120 mls of milk for 5 days, 2 weeks after the TMZ round) 

Milk is the hardest to find but others are easy to do. Mom's plts jumped from 52000 to 155000 in two weeks with these. And still around 160000 after 5 days of TMZ. WBC & RBC, Hemoglobine, LYM all are excellent. 

Lastly take folic acid and vitamin d supplements at least 5 days a week.

RE: Temodar and low blood counts

by SarahGrey on Wed Apr 29, 2015 12:08 AM

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Hi Paul,

Just checking if you're on Bactrim as well?  That caused my husband's platelets to plummet.  Once it was switched to another med (Mepron, maybe?) they went back up.

All the best,

Sarah

RE: Temodar and low blood counts

by Bruce_Edward on Wed Apr 29, 2015 03:58 PM

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Hi Paul,

My daughter was given nulasta (injection) and it shot her counts way up. It worked well for her. She never had to stop the temodar. Hope this helps, Bruce

RE: Temodar and low blood counts

by DS23SEARCH on Sat Jan 02, 2016 06:45 PM

Quote | Reply

On Apr 28, 2015 9:57 PM yildizsungur wrote:

On Nis 28, 2015 9:14 Paulgd wrote:

Hi All,

I started treatment for GBM at the begining of March with the standard treatment of 30 radiation sessions with Temodar over a 7 week period and after 4 weeks my platelets levels dropped so had to stop taking the Temodar. I was told that it could take 4 weeks for the platelets to recover. It now has been 5 weeks and they are still down and in the last 2 weeks the white blood cells and red blood cells have dropped too. They keep telling me that they should of recovered by now but not to worry, but I can't help worrying when they keep booking me in for more transfusions each week.

I was wondering if anyone else had a similar trouble and how long did it take for their blood levels to improve.

Thanks,

Paul

We had the same problem and it took a long time to recover. We even asked for a bone marrow biopsy and realized there was bone marrow loss because of temodar. The drs said maybe we would never get any kind of chemo meds again. I tried lots and lots of things to rise them but nothing worked quickly. They were increasing so slowly and months were passing through without any treatments. Finally I found the magical formula that worked to rise them like a jet. Now we are applying the below nutrition to keep plts, rbc, wbc in line.

1-Eat avocados every day. Start with one everyday for a week then eat least 1/2 They help the bone marrow to repair.

2-Eat at least a handful of raspberries every day (mom hates avocados so we blend them together and drink like a smoothy)

3-Drink a cup of fresh brewed lavender tea every day (just put a pinch of lavender into hot water and let it brew)

4-Every night put a dried date into a glass of water. Let it rest all night and drink the water in the morning. (no need to eat the date, it's optional)

5-Drink mother's milk if you can obtain off course. (A lactating friend is pumping and giving it to us every month. Mom drinks 120 mls of milk for 5 days, 2 weeks after the TMZ round) 

Milk is the hardest to find but others are easy to do. Mom's plts jumped from 52000 to 155000 in two weeks with these. And still around 160000 after 5 days of TMZ. WBC & RBC, Hemoglobine, LYM all are excellent. 

Lastly take folic acid and vitamin d supplements at least 5 days a week.

Can you tell me if what you listed in this post is what you are referring to as your magical formula that made the points rise like a jet?  

Our NO has said now that we are at the end of the line.  I have been trying to get the  WBC & RBC, Hemoglobine, LYM back in the normal range but with no results in 4 weeks.

Please let me know if your formula is still working?  

Thank you.

Joan 

RE: Temodar and low blood counts

by StenE on Sun Jan 03, 2016 09:48 AM

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Hi,

I took Temodar for 24 months after intial treatment with chemos and autologous stem cell transplant. During the chemo period my platelets and blood cells were quite low but recovered quickly. When I took Temodar my platelets were fairly low, around 70-80. Now almost a year after my latest Temodar pill, the platelets are alomost back to normal.

Good luck!

Sten

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