[KeithH17Participant]

Hi everyone,
Yes I'm having the dreaded BMB tomorrow to try and find out why my bloods are staying flat.
Haemoglobin,Nuets and Platelets were all very low at the last count one week ago. I have had a blood transfusion since then but not Platelets. This will shine some light on the problem so we can get to the bottom of it. I have to say I'm well fed up with the whole thing now. I can't make any plans for holidays or anything in advace because of hospital appointments and that's really annoying but it can't be helped and I just have to get on with it. When I get the result of the biopsy I will post it asap.

Stay well everybody.

Keith.

[andygParticipant]

Hi Keith
I hope everything goes well with your BMB tomorrow and Wayne is gentle with you. Hopefully when you get the results you will be able to start to get your bloods back to normal.
I had my latest blood test Friday – everything was ok except my neutrophils which are now down to 0.4! On my rest week now so they're going to make a decision on what to do after next Friday blood results. Till then it's watching old movies and keeping away from sneezing people.
Take care
All the best
Andy

[BADGERParticipant]

hi Kieth

good luck with the BMB i hate them i suppose its parr for the course but i hope its good news for you and they can sort you out to get a bit of normal life I have just started Velcade had 3yrs 6mths remission from CDT hope i get a good one from velcade
love Jo x

[KeithH17Participant]

Thank's Andy,
Had BMB and blood test and got a call from the ward 4pm with the following results.

Hb up from 8.5 to 9.7
Neuts 0.3 to 0.4
Plts down 20 to 19
PP's not known
BMB not known
I've been told to stop all treatment until I've had discussion with Saunders on Thursday at 9.45.
He will be looking at the BMB ahead of the meeting.

Now I think the Rev has stopped working so the MM is now refractory (back on the move)
I was told when I asked that the Biopsy detais were not known but I don't believe this to be the case.
If nothing has changed why have I had to stop the treatment ?
When a Consultant wants to meet and discuss something it's because there's something he wants to tell me,a change of direction I'll wager. It's easier to get an audience with the Pope than an appointment with him in person.
I don't like mystery or subterfuge I prefer everything upfront and out in the open as all things should be.
What with bleeding gums, low platelets and neuts coupled with chronic fatigue you don't need to be a doctor to work that one out. The first time I relapsed I had BMB on Tuesday and then a phone call the next day telling me that I had relapsed and I was to start treatment on Friday the same week. What happened to that kind of service?
Of course I may be completely wrong and all is well but it's the not knowing that bugs me. How do you guys see it?
Am I just being paranoid or seeing it as it is,either way all will be revealed on Thursday and I'll let you know.

Stay well Andy and good luck with the bloods on Friday.

Keith.

[KeithH17Participant]

Hi Jo

I'd say 3 years 6 is great remission,I got only 7 months from Velcade and that was after second sct.
Second is hardly ever as good as the first,I got 2 years 4 from that one. I have been told to lay off the latest treatment until I have seen Consultant on Thursday when he will discuss the BMB result and decide what to do.

Hope Velcade does the trick for you Jo and give you long remission.

Keith.

[eveParticipant]

Hi Keith

You sound very down,and who can blame you,I would agree they know the results,the meeting will be to decide the next treatment,in some ways they are trying not to leave you in a state of not knowing,but they forget,you become an expert on yourself.My advice is look on here at all the trials taking place in you area or not,and go armed with as much information as you can,see if there is something there for you.
Find a hurdle to jump over Love Eve

[jmsmythParticipant]

Hi Keith

I cannot answer any of your questions or give advice on Trials but just wanted you to know tha tI am thinking of you and hoping all goes well for you tomorrow and you get your questions answered

Love Jean x

[tomParticipant]

Hi Keith

Well wot a to do as the saying goes 🙁

Am sure you kn ow I say am a "If My Dr is smiling am happy" well that is because I trust my Dr and I know if I need to know anything its him that I see, and if its My Cancer Nurse Helen I see and need to know more My Dr is in the next roomits a case of waiting till he has done with who is in his room at the moment, he has even returned my call at 7.30 at nite 😀

Stay Focused Keith as its a hard enough Job when it all runs bloody smooth M8.

Am with you all the way and as for Holidays they can wait get fit and well first then you can book failing that always the good old UK M8 its what I do these days 😎
Am with you on this one

Tom "Onwards and Upwards" xx

[HelenParticipant]

Dear Keith
All I can add to what the others have said is to hope tomorrow gives you some positive treatment approaches. Be sure to let us know how you get on, thinking of you
Love Helen

[KeithH17Participant]

Thank you Helen/Jo/Eve/Jean/Andy and of course Tom for your replies. You can be sure as soon as I know you will also know as to the outcome of the BMB. I'm not going to speculate as to the what the result will be as there is no point in doing so as what will be will be and that's all there is too it. I am not down about this but more annoyed and will put my opinion forward along with questions that I have ready for tomorrow. I will take a positive attitude in there with me as always and we will see where it all goes.
The one thing I will say is this is the best I've felt for month's and that must be a huge positive in itself whatever may be happening on the inside,my neighbour across the road saying how well I looked. Makes us feel like real frauds doesn't it.

Stay well everyone.

Keith.

[DaiCroParticipant]

Hi Keith,

I am looking forward to the results and I truly hope that the prognosis is carry on carrying on… with Rev & Dex… even if it means limping along with little change for good or ill, until one of the licensed drugs from America reaches Europe and the UK for licensing here.8-)

If not.. then what?:-0

My consultant was quite honest and open when she told me that there are no trials, novel agents or any other kind of treatments available excepting those already tried. Which is why I continue on Rev & Dex with my light chains on 423 (125 in July). My other consultant, seen a couple of weeks ago said that this would be my last cycle… but I disagree. While in the Queen's Medical Centre with my DVT & C: Diff (I attend the City Hospital for my MM) I was seen by a Haematologist who said that it was no wonder that my light chains were high (but not that high) when the Rev & Dex were having to try and absorb themselves into my bloodstream through a virulent bug like C: Diff. 😉

She said that we needed to get the C: Diff under control and then give Rev & Dex a clear run at doing its job… unhindered by nasty gut bugs that are bound to be interfering with the treatment processes. It was clear as day to her… a case of simple common sense… so why can't my consultants see that and act accordingly? :'-(

It is to be remembered that it took them ten weeks to call my problems being C; Diff… despite several visits, including isolation in the day case unit.:-(

Anyway… there's no way they are taking me off Rev & Dex without giving it a clear chance to work. 😎 😀 >:-( :-0

I'll be extremely interested to see/hear what they say about your condition Keith… if there is anything on offer or just the kitchen sync by way of previous successful ltreatmnets… or a mix and match… butI hope it doesn't come to that.:-)

Dai

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