[TinaParticipant]

Hi,

I guess you are the only other person on this forum using Pomalidomide Gaye, this question is for you!

Patrick has started Pomalidomide together with Dex.The Dex dosage is 40mg once a week is this similar to what you are taking? he has also been warned about the elevated possibility of having a blood clot and advised to wear compression stockings. Of course this may be specific to his particular case but was this possibility highlighted to you? (what's the choice anyway!!)

Hope you are doing ok

Tina

[GayeParticipant]

Dear Tina – thanks for your message and this is how Pomalidomide has been after 21 days. I am now on my free week as from today. I too take 40mg dex per week even in the free week. Because I have low platelet counts it was decided to stay away from any blood thinning tablets such as aspirin/warfarin etc. Pomalidomide also attacks the White Blood Cells and Neutrophils so tell Patrick to keep a very close watch on both counts and stock up with plenty of GCSF injections. I suddenly dropped down to 0.3 and frightened out of my life but thankfully it was resolved.

It's hard to say how I feel after the first cycle. Generally I have felt reasonably well and if it wasn't for the back pain would say that so far it has made me a bit dopey and sleepy and a bit chemobrainish. Dex and I are living together quite well. It will be interesting to hear how Patrick deals with his first month aand how much our responses have in common. I send both you and Patrick much love and thinking of you.

Love, Gaye xx

[TinaParticipant]

Thankyou Gaye,
With regard to the low neutrophil count, Patrick has had extremely low counts for over a year now. Mostly the count is 0.5 but has dropped down on occasion hence the number of stays in hospital last year with neutropaenic sepsis.Similar to you Patrick has a low platelet count too.
He is also suffering with more pain this time in his sternum and the ribs across the chest, he had an MRI last Friday and we await to hear the final results this week – hopefully something positive can be done e.g.radiotherapy or another vertebroplasty.
Thankyou for your kind wishes, look after yourself

Love Tina x

[GayeParticipant]

Dear Tina – yes we both sound in similar situations. I've just remembered that Patrick's consultant does not give him GCSFs hence his frequent hospital stays, so forget about stocking up on the injections!

I am wishing you both well and will keep you posted after my first check up at Barts on Monday.

Take care,
Love, Gaye x

[GayeParticipant]

Just an update on Pomalidomide after first cycle. I have become extremely crabby as time has worn on, a mixture I think of the drug but also of the unremitting back pain which has finally worn my patience and tolerance out. It now just wants to make me cry, my patience and self-confidence have just gone as every movement brings pain and more loss of energy. Am I feeling very sorry for myself?. Yes, because if I can't allow a bit of self-pity now and again and I just don't know how I would cope. To add to my miseries when I went to Clinic yesterday they were out of the main drug, Pomalidomide and I would have to go back to collect it. The restraint I had to show without strangling the pharmacist – a three hour return journey is not my idea of fun. However, a courier is bringing it to my home this evening so hopefully it has been resolved. AARGH!

First visit re the RT tomorrow morning for the simulation so fingers crossed. I have been reading your posts on RT at the moment so I am getting an idea of length and success of the treatment. Thank you for that. Glad Bridget you are feeling some benefit but today does not seem a great day with pain and other nasty little buggers.

Thank you for listening and posting and keeping us up to date. Felt the need to rant and going to the hospice day care has helped so much. Tina, any further news on Patrick as he goes through his first cycle?

Love to you all. Gaye xx

[BADGERParticipant]

hELLO Gaye

so sorry you are feeling so unwell at the moment you have every rite to feel sorry for yourself I hope the RT treatment goes well and it will soon help with your pain

Love JO XXX

[brochoParticipant]

Dear Gaye of course you are entitled to feel sorry for yourself , you have been going through h**ll lately!! Tomorrow I will be willing your rt department to get you sorted as quickly as possible , all my fingers and toes crossed too Mind you they must have decided you were a lady not to be messed with today if they are sending your meds out by courier, I should think so too Hang in there Gaye love Bridget x

[MinParticipant]

Dear Gaye
If you cant moan to friends who can you moan to? and thats what friends are for.
Platitudes are not going to take away your intolerable pain;
Im still suffering from my sciatica and it can't possibly be anything like you must be going through. I know mine will go away with rest and time; you on the other hand need some better pain killing drugs until your RT is done and working. Please see someone to help you with some stronger drugs to get you over this period. Make you more comfortable and able to keep us bouyed when the going gets tough.
When Peter had his RT it was one massive blast. No going back and forward for short bursts. After aboout 4-5 weeks he was able to reduce the pain killers and get about a bit further.
I know you help out at the hospice, is it possible to get a bit of therapy of the calming chill out variety for yourself for a change? Think about it.
Love Min

[zasrsParticipant]

Hi Gaye

You have every right to rant and rave it usually helps no end!!.Hope the drug arrives quickly, so sorry you are in pain there is nothing worse.

with love

sarah xx

[GayeParticipant]

Thank you all you lovely lot for your wonderful words. I used to help out at the hospice Min but I stopped that long ago other than helping out with campaigns. I need their help now and the idea of me flapping around with a duster is just too much! I now flap around with my stick and that frightens the living daylights out of them. If they behave they Knighted or Damed. He He, I enjoy that!

I thought I would update you that the courier service got to me at 9pm yesterday, just narrowly avoiding Holby City. I completely forgive then for coming up trumps. I was looking gorgeous in my rather tatty dressing gown but you could see he was impressed! Cycle 2 started today so good luck everybody and many, many thanks.

Love, Gaye xx

[mhnevillParticipant]

Dear Gaye

Have just caught up with these posts. So sorry you are having such a rotten time. I'm sure that in an earlier post you said you were awe of folk. I am certainly in awe of you.

Do hope the RT works well for you.

Love.

Mavis x

[GayeParticipant]

oops, sorry, this is Gaye messing about!

[Author]

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