[GayeParticipant]

Dear Tina – I have been at clinic today and we have discussed access to both of the above drugs. I know that Patrick has had Bendamustine and will go on Pomalidomide next. Has he been allowed access to these drugs within clinical trials or was he able to get them through special circumstances? My problem is that my counts are always low and could be too low for the regulations attached to each individual clinical trial. Meanwhile I am still on Revlimid but may need to go on another drug which is, as yet, unknown.

Would really appreciate your thoughts.
Love, Gaye xx

[TinaParticipant]

Hi Gaye – We were told that the bendamustine was accessed as part of a clinical trial however he was not part of a group of people taking part just on his own? Access to pomalidomide is through special circumstancesas he has exhausted all other recognised treatments.
Similar to you Pat's counts have been low sometimes critically low which became most apparent during the fifth and sixth cycle of Revlimid which he stopped taking around Nov 2009. Even so he still began using bendamustine in Feb 2010 which has been known to drop counts even more – needs must I guess. The gamble paid off and his counts improved for approx 7 months. How many cycles of Rev have you had?

Tina X

[GayeParticipant]

Dear Tina – thanks so much for your very informative reply. I think I have just started the 7th cycle of Revlimid at 15mg. For the past three months we have added an extra week's break along with one I had earlier on so it may be my 6th. Normally during the break my counts start rising but after 2 weeks my platelets in particlar have dropped when usually they rise on their own. This has meant infusions and of course I take the GCSF injections as the neutraphils also drop. To know this has happened to Patrick makes me wonder if Revlimid has now begun to get too toxic for me. My consultant suggested this might be the case but we are carrying on for another cycle to reassess the situation.

I am in a 'plummet' stage, more of being in a no-mans land, and it's all a bit scary. The pox to myeloma and but thank you for your invaluable help.

How is Patrick doing?

Love, Gaye xx

[TinaParticipant]

Dear Gaye,

Your response to Revlimid appear very similar to Patricks. Currently he is taking Thalidomide, he also uses Itraconazole a broad spectum anti fungal drug as he has had serious problems with fungal lung infections.
At the moment he is having transfusions of platelets once a week, 2 – 3 units of blood every 2 weeks and is running out of places to insert a cannula which really gets him down, neutrophils are constantly low – 0.5. GCFS injections increase neutrophils only very very temporarily and then drop right back down again. He controls back pain with MST and has got used to the peripheral neuropathy esp in his feet. Otherwise he actually feels ok right now!

Best Wishes
Tina X

[GayeParticipant]

Dear Tina – Patrick has certainly been through the mill but I am sure all your love and wonderful support gives him so much. Well done and I admire you both the way you are living with this. It's good to know that despite all his treatment he is actually feeling ok right now – great! May it long continue.

I have managed an increase in platelets of 1 from Monday – a small but important move upwards for that I am grateful! Next test on Tuesday.

Thank you again for all your help and let's try to keep hold of our positivity.
Love, Gaye xx

[brochoParticipant]

Dear Gaye what an awful position to be in I think you summed it up just right –a pox to myeloma You are in my thoughts and I have fingers and toes crossed for you .Tina I am sure you are Patricks lifesaver and what a great team you must be Lots of love to both . sorry not very eloquent its come -down -dex -day !!

[GayeParticipant]

Thanks Bridget for your kind words – whether you are on dex come-down days or not you are always there for us so blow eloquence! I decided to make yesterday a hospital day but not intentionally. After having my blood test in the morning I then twisted my left ankle getting up from the settee and yes, back again, this time in A & E. It came up like a balloon but after a good night's sleep and a bag of frozen peas on the offending ankle, is returning to near normal size. Diagnosis – a sprained ankle. Oh dear!
Love, Gaye xx

[brochoParticipant]

Dear Gaye poor you what a day still you made sure you got value for your money with the nhs !!haha Take it easy today no dancing or jogging for you well unless you can remember the handjive that is love Bridget x

[GayeParticipant]

Dear Bridget – Just thinking about your title and my hospital experience on Thursday with A & E at my local hospital. I was in and out in about 2 hours. Everybody was very helpful – no sooner in X-ray department when I was called and then I saw the doctor who was polite and caring. We all too often hear the moans and groans about the NHS but this was excellent service. Well done.
Love, Gaye x

[brochoParticipant]

Good morning Gaye I do think despite my grumbles about the beaurocracy that we are very lucky to have a health service like ours It makes me weep when I read of countries like america where there are thousands who can access even the basic care. We are especially well cared for in cancer treatment I think ,the stumbling blocks seem to be in diagnosis but once you are identified it is a very slick service. Hope your ankle is feeling a little better today and you have a good weekend We have lovely sunshine here so I am going to be good and do some housework , only because the dust is showing up more if I am honest !! love Bridgetx

[JoannaParticipant]

I am going to start a combination of Bendamustine, prednisolone and thalidomide next week ( three week's treatment, one week's break for up to six cycles). Has anyone had this combination and how did they get on?

Jo

ps How do I start a new topic on the forum?

[GayeParticipant]

Jo – go to the bottom of the treatment home page and there is a button saying start discussion. Press that and you are ready to go. Good luck with the bendamustine. I know that Patrick has had bendamustine but I've no idea if it was a combination drug or on its own.

Love, Gaye x

[TinaParticipant]

Hi Jo,
Yes, Patrick was on Bendamustine with Thalidomide for almost a year with very good results. The only drawback was that the Bendamustine appeared to knock back both his platelet and red cell count, I will say however that this was also a similar scenario with Revlimid previously.Patrick did have to take anti-sickness tabs before and on the day of the bendamustine infusion in the very begining. Hopefully the combination will work for you for just as long.
Oh Gaye, if it's not one thing i's another! I know it is early days yet but how are you tolerating the Pomalidomide?
Bridget, you know, Patrick is the most single-minded focused person I have ever met and he and I have been a great team for 34yrs. He has been attending hospital up to three times a week recently but when he is not there he still manages to get up at 4.30am fighting through the pain and goes to work. What can I do with him??

Love to all
Tina

[GayeParticipant]

Dear Tina – As you know I have long followed your shared journey and admire you both for how you have and are dealing with it. I know in the early days that Patrick used to post but it is lovely to have you do it now. You both inspired me to go for the pomalidomide and I am amazed that he still works despite the pain. Yes, he is a gem. What can you do with him? Just carry on as before – you sound a wonderful team.

Regarding the pomalidomide, I am mid-way through the cycle and am beginning to see its impact on my blood counts. They are low anyway but Pommy, like Revlimid, targets the neutraphils so I am having to use the GCSF injections. Like Patrick I visit hospital roughly 3 times a week. Such joy! I will keep you informed on how the next 2 weeks of the cycle go.
Love, Gaye x

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