This topic contains 12 replies, has 9 voices, and was last updated by 
Helen 11 years, 6 months ago.
Hi everybody,
Had blood test today with the following results…(Hb 8.1) (Neuts 0.3) (Platelets 20). That means I am Neutropenic which I have been on and off for the past 4 months. I am going back to the hospital tomorrow for 2 units of blood to give my body a boost. Today is the last day of the cycle before the rest period so that in itself will allow my bloods to recover. I've been told that a platelet transfusion is not usually given until the count drops below 10.
The Revlimid is causing the problem so maybe a reduction in the dose might be the answer as I am on the maximum at the moment (25ml). I have had a chest infection for the past week which is now just about clearing up and my gums feel very sore. I also have a rash on my chest and back which feels very itchy. I have been feeling tired in particular first thing in the morning which is because of the low Hb count. Problem seems to be that when you are taking any drug 3 out of every 4 weeks the body never gets to recover enough before it all starts again.
I think I need to stop everything for 2-3 months to allow my bloods to recover because I don't think they ever will while I'm taking Revlimid. At the same time it is working in all other aspects and I don't want to jeopardise the good side of things, it is a difficult call to make.
Good health to all.
Keith.
Hi Keith
Well I for one feel for you, what a decision, to stop what is making you better/then ill to nothing that you know will make you ill?? (if i got it correct??)
And what is the Consultants view on it all?? am sure he/she has some input to throw on the smouldering fire?.
I cant make that Call for you Keith but I wish you luck in your decision.
And You Stay Well My Friend
Tom "Onwards and Upwards" x
Hi Keith,
I am afraid I can't offer any suggestions/opinions as my husband Phil is just at the start of his MM journey and he has only had one infection so far that resulted in a hospital stay and he has not needed any extra platelets yet. I just wanted you to know that my thoughts are with you and I hope you find a solution with your consultant.
Megan
What a bummmer Keith.
Recently I had to chose between Radiotherapy which could "cure" my Advanced Prostate Cancer but could severely interfere with my bowels and everything else down there or Hormone Treatment where I could grow breasts and suffer hot sweats, amongst other unpleasant side effects, which would put the cancer on hold for 2 years (approx). After much discussion with the Radiotherapy Consultant and my Doctor I decided let my feminine side shine through and go and buy myself a nice handbag.
Bet of luck on your decision
Kindest regards ? vasbyte
David
I love your sense of humour David and who knows the new you might just be what's needed LOL.
Mind you whatever you do stay off the HRT HAHA. I'm in for a blood transfusion tomorrow and I'll be trying to find out more as to what's going to happen.
Thank's again David and you take care.
Keith.
Hi Keith,
I was in for a consult today… my Light Chains are at 435… up from 325 in September… creeping up but nothing drastic as yet and anyway, I am told there is nothing else for me at the moment…no trials, no novel agents (such as Bendamustine etc.,) so it's Rev & Dex or nothing.:-/
The Vancomycin treatment for my C:Diff seems to be working… and the order of the day seems to be to let that treatment finish (2 more weeks) and see if the the C:Diff has been causing problems re: absorption with the Revlimid. My consultant said she was willing to let this cycle through but I think it needs one more after this to give the Vancomycin a real chance. If the Light Chains remain up, or move further up, then it will show that the C:Diff has not been causing the problems… I think it has but we will wait and see.;-)
Oh, and I am also in for two units of blood tomorrow as well… 😀
Dai.
Hi Keith,
Eva here. I think that only a consultant can make the decsion on what to do about your treatment. However, my reading suggests that there are quite a few patients on less than 25mg of Revlimid and that it still can work at that level for some. I've even heard of doses as low as 5mg. Given the fact that you've been neutropenic perhaps your onc will lower the dose. I understand why you'd want a treatment holiday – again it would depend whether your myeloma starts reving up. A compromise might be a lower dose of Rev with careful and frequent monitoring. Even a rash can be a reason to lower the dose.
I'm sorry you're so neutropenic. When my hemoglobin dropped below 90g/L I found it very difficult to walk up stairs. Your neutrophil reading might be making you susceptible to infections. I understand why you are being given platelets, but I'm also wondering, would it be possible for you to have IV immunoglobulins to boost your immune response?
Best,
Eva
Hi Keith…just to to re-iterate Eva's comment …I started on 25mg Revlimid as part of the X1 trial..but this knocked my Neutrofils for six and was close to if not neutropenic all the time…they have now managed my Revlimid down to 5mg and my Neuts are now 1.73…good luck with finding a solution…Phil
Hi Dai,Eva and Phil thank's for your replies. No Eva I'm not having platelets only blood. Platelets are only given when they drop below 10 and mine are currently at 20.Went to hospital today for transfusion, 2hrs and 7 attempts by 4 different people and the cannula was eventually fitted so it ended up a 6 hour day. Dia how long have you had the C-Diff ? and when you say there is no more treatments or trials left for you to try surely this can't be right ?
There must be something out there you can try. When you say there's nothing do you mean there is actually nothing or nothing that has been licensed ?
Hope things get sorted out for you and quick.
Good health to all.
Keith.
Hi Keith,
Only 20 minutes and 3 attempts by the same person to get my cannula in and then it went in easily and stayed in with no problems… so just a 5 hour day for me. The No. of beds/chairs taken up for transfusions has had its effect on the Day Case Unit and so they have shipped transfusions up to a large side-room off the Burns Unit, staffed by 2 nurse members of the Haematology team… no Doctors and up to 8 patients maximum. This was my third visit this year and the maximum has been 4 patients, so there has been a good level of care, leaving the Day Case Unit freed up for other things.8-)
I have had the C: Diff for 4.5 months… end of June to present day with another 2 weeks of current treatment on Vancomycin… we will see from there. I do know that if the C: Diff had not raised its head I would have had a lovely illness free summer… and from that I take it that the Rev would have responded differently… with better absorption and hopefully better light chain results. For one of my consultants to say that this cycle should prove whether or not there has been any correlation between the Rev and the C: Diff is a bit silly when I will not finish the course of Vancomycin until the same time as my current Rev rest week… as far as I am concerned I need a month where I am not on any C: Diff treatment at all before they can start looking at correlations… I am utterly convinced that there is a correlation and that Rev has not had a proper chance to absorb and do its job properly.:-0
As far as no more treatments go, my other consultant (October's meeting) said that currently there are no treatments available… period. Nothing licensed , nothing on trial, nothing in the pipeline… so it's either Rev & Dex or a previously used treatment… end of… she really was that succinct (and, as I heard it, very frustrated too). 😐
So I'm hoping for at least one more Cycle of Rev & Dex to carry me through to the new year and then positive news of a downward spiral in my light chains (even if it's only 0.05). 😎
We need NICE and its satellite bodies to get some licensing done in the near future… but that that costs money… :-S
Hey Ho!.
Dai.
Hi Keith
Sorry to hear your struggling with your bloods. My last blood test showed everything had recovered to acceptable levels except my neutrophils which were 0.6 I will have to see what they are on Fridays test. I'm assuming it's the Revlamid but the consultant is guessing it maybe the cyclophosphamide. It may also be a result of all the antibiotics I was on for all the post holiday infections. So Fridays bloods may shed some light on the cause. Fingers crossed the neuts will have recovered a bit. I hope everything goes well for you and Dai with the neutrophils and they start to recover. As Tom would say "onwards and upwards"
All the best
Andy
Dai, I really do hope it all works out positively for you and that you start having some well deserved good health.
It is frustrating when things hit the buffers and come to a halt and then being told there's nothing else to try.
You mention previously tried treatments which I have heard mentioned but never spoken to or read about anyone actually trying them let alone having success with. I am very keen to follow your case as it could well be my own situation at some point. Just have to polish the barrel on that shotgun LOL. Like I've been saying I feel well enough even though my bloods are not where they should be but the whole thing I have to admit can be worrying. I will say one thing. I've never had any problem with regards to treatment and certainly cannot complain with the care I've received but if I was ever refused treatment because of cost there's absolutely no limits to what I would go to in order to get the treatment that I need. Only on medical grounds should treatment be withheld when it could have an adverse effect on the patients health and NEVER EVER cost. I still remember the words and I even have it in print
quote:-"it's a travesty that cancer patients should be denied access to life saving drugs and if elected we intend on setting up a fund of £50m for the first year rising to £200m to allow these patients access to the treatment they need" and who said it? none other that our Leader David Cameron and we should all hold him to it.
That's my rant over…Take care Dai and stick with it as I know you will.
Keith.
Dear Keith, Dai and Andy
You are all struggling in your different ways, but I love the sparky positivity you all have, just keep it going please. It feels like having a bunch of brothers fighting against the mm corner( I only have sisters, so I can only imagine)
Hope you all get some better numbers soon.
Love Helen
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