platelet levels still dropping

[shoppingtrolley]

My OH had his first FCR treatment 5 weeks ago. Was due for another to start last Tuesday, but platelet levels low (72), so delayed a week until another test and hopefully pick up in levels; however, have just got results, even lower now (68), so probably another week's delay. Is this standard? Is there anything he can do do increase the platelet levels? It's all a bit worrying and disruptive - had hope to get away on holiday once it was all over, but that keeps changing ....

[AussieNeil Administrator]

Platelets are very difficult to accurately measure with automated testing (the standard means of doing blood test results to reduce costs), because by their very nature, they clump together. For that reason, when there's a low platelet, a manual count is needed to provide a more accurate result. I've seen automatic testing repeatability claims for platelet counts of at best +/-10 and more realistically +/-25 and +/-40. What this means is that with such a small difference (72 and 68) effectively your OH's platelet counts would be considered stable. Platelets also have a very short lifetime - about 9 days, so are sensitive to changes in bone marrow production.

And yes, it is normal to delay treatment occasionally to allow the bone marrow to recover.

Neil

[Cllcanada Top Poster CURE Hero in reply to AussieNeil]

Platelets like to PARTY in the spleen... so that can effect counts... 😜

[shoppingtrolley in reply to Cllcanada]

am not certain I quite understand what you mean? could you give me a bit more detail? sorry to be dense ....

[Cllcanada Top Poster CURE Hero in reply to shoppingtrolley]

Sorry...an attempt at some platelet humour... an enlarged spleen can trap platelets... and release them so counts can vary...

About the test..

labtestsonline.org/understa...

[Newdawn Administrator]

Sorry you've got this concern about your partner's treatment being delayed shoppingtrolley. In addition to above, you may find this old but nevertheless relevant and easy to understand article about spleens useful in understanding how the spleen can affect platelet counts;

updates.clltopics.org/706-e...

Hope things improve soon, it must be an anxious time for you both.

Newdawn

[devonrr]

Holidays during treatment are possible my consultant told me at the time.

I stayed in the UK and did long weekends. I must admit they were driving holidays in the car I bought because I was starting treatment and I always wanted one. You review your life, don't you! It was a RR Evoque. I kept my track car and that wasn't used for the 5 cycles.

I took with me just in case. My thermometer and my chemo clinic contact card.

Holiday breaks were always in the second half of the cycle for me.

After treatment I am now back to holidays further a field and a bit more adventurous. Off to Silverstone camping for a race weekend soon. Yippee!

[hervec]

Hello from French man...with a poor English.

The surprising point is that they plan a new FCR treatment because your dropping platelets.

And they don't start treatment because they are dropping.

I suppose that it is not the only "symptom" leading to this second treatment.

If you are too anxious don't read the next lines

I am in a similar case. FCR in 2012 Platelets lowering since one year 70 BUT haemoglobin and leucocytes ok. I have never been told to restart FCR.

Two idea are under investigation: Low vitamin B12 (i would prefer) OR Myélodysplasic Syndrome that would be a very bad news.

A bone marrow investigation is under process.

regards

Herve

[shoppingtrolley in reply to hervec]

Il semble qu'une baisse de niveau des plaquettes est normal quand on commence le traitement, puis cela devrait remonter. Le souci est que son niveau de plaquettes continue à baissser (63 aujourd'hui).

Tu as eu combien de traitements FCR en tout?

On est un peu inquiets - c'est la 3ieme fois de suite que cela continue.

Bon weekend à toi.

[Newdawn Administrator in reply to shoppingtrolley]

Hi shopping trolley,

Your contribution is valuable but I think you'll find most members don't speak French so if possible a translation would be very helpful. I've taken the liberty of doing a google translation on your message (hope it accurately reflects what you've said);

'It seems that a drop in platelet level is normal when you start treatment, and then it should go up. The concern is that her platelet level continues to decline (63 today).

Have you had and how many RCF treatments in total?

We are a bit worried - this is the third time in a row that it continues.

Have a nice week-end.'

Regards,

Newdawn

[shoppingtrolley in reply to Newdawn]

sorry, I thought I was replying to one person.

[hervec in reply to shoppingtrolley]

Hello shoppingtrolley I did a mistake reading your first post. I taught you were speaking about a second FCR several years after a first one.

In fact you are speaking about a second round of your first FCR.

So my case a nothing to do with yours.

Sorry

Herve

[shoppingtrolley in reply to hervec]

No problem at all, don't always explain myself well!

[shoppingtrolley]

Well, here we are - 3 lots of FCR completed, although the last one was cut short (3 days instead of 4) because of low neutrophile reading. Platelets are still low, fatigue is still a big issue, which means that this is all feeling a bit negative at the moment, wondering if and when things are going to get better. Finding it v hard to remain upbeat.