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Prognostic significance of extremely low platelets?

Kharris92130
Posts: 5
Joined: Oct 2013

My husband was diagnosed with AOA III in September.  He had surgery to remove an 8cm tumor on his rt. frontal lobe,  followed by 6 weeks of RT and tmz.  His last treatment is today (yay!).  However, his platelets dropped dramatically, from 329k on 10/15, to 52k on 11/1, and 30k on 11/4.  His NO wants to do a PET scan to determine if there is a cause for this, other than the effects of tmz.  he will have another CBC on 11/8.  If platelets are still lower NO recommends transfusion.  My question is whether or not this precipitous drop in platelet levels has any correlation with overall survival.  It's incredibly disheartening to hear that chemo cannot be continued, nor can any other surgery be performed unless platelet levels rise above 100K.  I don't want to face it if this is the end of treatment, but if that is indeed the case, I want my husband's remaining time to be filled with doing things that being him joy, not attending daily hospital appointments.

mccindy
Posts: 82
Joined: Jun 2013

Although I haven't personally had to have chemo yet for my tumor, I've had discussions with several other tumor patients who have.  It seems that many of them experienced a drop in platelet levels from the medication.  Adjusting the levels of the medication seemed to do the trick for most of them to return platelet levels to normal.   I don't recall that any of those I spoke to had any change in their prognosis due to this issue, most of them were able to continue with their treatment.

Sten's picture
Sten
Posts: 97
Joined: Apr 2013

I have had CNS lymphoma (a brain tumour) and I have had numerous chemo therapies. My platelets have sometimes been very low, less than 10k. After a while, I have recovered and got a higher platelet rate, and then I got more chemo. I have now been free from visible cancer for more than one year. Since 9 months, for four days every month, I take 250 mg Temodar pills (a chemo) to prevent a relapse, and the plan is to continue this treatment for totally 2 years. My platelets are still a bit low, about 80K, but my doctor says that this is not a problem, I can take my Temodar pills anyway.

Sten

 

Kharris92130
Posts: 5
Joined: Oct 2013

I appreciate your sharing your history with low platelets.  My husband seems to be on the wrong end of many of the statistics and I continue to worry about the significance of the very rapid, very steep drop in platelet levels.  He will have another CBC today. Hopefully his platelets have stabilized.

mccindy
Posts: 82
Joined: Jun 2013

While it is true that chemo does affect all cells in the body, Temodal used for brain cancer is not nearly as toxic to the body as the standard chemotherapy used for other cancers.  It is not really a good idea to just "never have chemo again".  Chemotherapy is a frontline defense used to stop the growth of cancer cells, and sometimes a lower dose will allow for platelet replenishment while continuing to fight tumor cell proliferation.  Just stopping the chemo and allowing the tumor cells to grow unchecked is not a good idea unless the doctor is recommending it because the risks outweigh the benefits.

Sten's picture
Sten
Posts: 97
Joined: Apr 2013

Chemo therapy is often the most efficient way of dealing with cancer. It has side effects, and white and red blood cells, platelets, mucous membranes, hair, and intestines suffer. However, there is recovery in most cases. As I wrote before, chemo caused my platelets to go down a lot and stay down for quite a while. But they got better, and I was able to endure more chemo. Finally, all visible cancer has gone away from me, and I feel quite well.

Of course, people react very differently to this kind of treatment, and you need to listen to what the doctors say.

Sten

 

 

falcon69
Posts: 25
Joined: Feb 2012

My son's platelet level dropped dramatically during his PCV chemo. His level was around 10 at one point. Treatments were delayed numerous times while waiting for the platelets to rise to an acceptable level and at one point he had to have a transfusion. It was explained to us that this is common with his type of chemo and had nothing to do with overall survival. Although it is rather disheartening to have to postpone treatment for weeks at a time, the treatment can be completed. 

Kharris92130
Posts: 5
Joined: Oct 2013

again, thank you all for your kind responses.  I wish I received an email notification when there are replies, as I don't check this website every day.

i had made the poor choice of researching low platelets online, and scared myself half to death!  Since then, DH's platelet levels have been rising, enough for us to fly out of town for the holiday. twice weekly blood tests and consults with a hematologist have eased my concerns that the docs aren't taking this seriously.  dH had pelvic radiation in 2011 for prostate cancer, which may have compromised his body's ability to regenerate platelets.  But the levels have increased to 65k as of 11/25.  Looks like chemo will be delayed by one week, at most.

Due to some, in our opinion, inconsistent care from current NO, DH is moving to MD Anderson in Houston.  Hopefully docs will have seen more cases that don't follow normal progression.  

Like I mentioned, DH had prostate cancer.  Surgery in 2010, RT in 2011, no detectable PSA since then.  He has also had two malignant melanomas.  His body apparently is very susceptible to tumor growth.  So I'm, understandably, concerned when the unexpected happens. 

sadinholland
Posts: 243
Joined: Apr 2011

Are there signs that the platelets are low before the bloodwork is done?

Sten's picture
Sten
Posts: 97
Joined: Apr 2013

Sadinholland,

I am not sure what you mean by "the bloodwork is done".

Platelet rate is measured by ordinary blood tests which are done in connection with chemo therapy. Platelet and blood cell numbers are decreased by chemo therapy.

Sten

 

sadinholland
Posts: 243
Joined: Apr 2011

I mean are there signs that your platelets are low, like fatigue, etc. I keep reading about individuals having to stop chemo for a while because of low platelets and I just wondered if there was something that happens to you when your platelets are low. Silly question I guess I'm a little anxious with my husband's appointment coming up. He is on CCNU. hr has had one dose so far. Prayers are appreciated.

Sten's picture
Sten
Posts: 97
Joined: Apr 2013

Hi again sadinholland,

Fatigue is certainly a consequence of chemo therapy. I do not think that there are special signs when your platelets are low. The effect of low platelets is that bleeding is harder to stop, if the platelet rate has gone down quite a bit, perhaps to about 20. If platelets are as low as 8 or 10, then the doctors usually advise a blood transfusion.

Sten 

BenLenBo's picture
BenLenBo
Posts: 145
Joined: Feb 2012

My son's oncologist/Hemotologist- handled his low platelet count by prescribing Dexamethozone for 5 days before his next round of Temodar.  Dexamethozone

allows the body to build platelets up to over a 100, before the next 5 day treatment of chemo ( temodar).  Low platelets prevent the blood from

clotting, so if a person gets cut, bleeding becomes a problem.  Platelets count should be around 150, Ben's would go as low as 37 . There is also, a diet

of foods that help build up platelets : fresh fruits- blueberries, vegetables - tomatoes, romaine lettuce - full list was posted already.

Benjamin has been cancer free since the day of his surgery, has the deletions 1p19q, had 6 weeks radiation, along with 6 weeks Temodar.  He was put

on maintance of increased Temodar for 6 months.  His dx was Left Frontal Lobe Oli-Grade II/III, treating facilities - John Hopkins, Mayo and Roger Maris.

Because this tumor has fingers which can spread from one side of the brain to the other- agressive treatment was done to kill any possible cancer

cells that remained- 99% resection was done.   Treating facilities have seen survivors 20 to 30 years +, so there is HOPE!

Stay strong and remember to FIGHT, FIGHT and FIGHT !

 

(((HUGS)))

Carol

sadinholland
Posts: 243
Joined: Apr 2011

My husband's appt. went very well. They are continuing him on CCNU for the next 12 weeks and the we go back. His tumor is actually smaller, after his first CCNU treatment. Praise God! I feel better.

 

 

Kharris92130
Posts: 5
Joined: Oct 2013

Hello everyone,

I wanted to provide an update on my husband's platelet situation.  In December we met with an NO at MD Anderson.  He immediately told us that 5% of men and 11% of women have problems with platelets from Temodar.  For these people, Temodar will permanantly damage bone marrow and prevent it from creating new platelets.  DH falls into this category.  The doctor went so far as to criticize the previous NO for continuing Temodar for the five days after he knew about the low platelets (they were at 52k on 11/01).  I know many people's platelets drop during chemo, and they must delay continued treatment by a few days or weeks.  I don't mean to alarm those folks; dh's situation was different, marked by a very rapid and dramatic platelet drop.  But the first NO was willing to start the 5/28 protocal of Temodar after platelets rose to 100k, which tells me he wasn't aware of the category of patients for whom this is contraindicated.   Patients and caregivers need to be aware of this possivility.  So for DH, we wait for re growth, with bi-monthly MRIs.  And, like many others, we pray for a breakthrough in one of the clinical trials.

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