[HelenParticipant]

Hi Andy
That’s a great result, let me know if you are in newcastle.
Love Helen

[HelenParticipant]

Hi Mavis glad to see you still in remission, you have to make the most of it. Get out as much as you can on that mobility scooter.
Re quality of life… Yes it is important and I understand what Dai felt, but even though I only got 14 months from mine, and had a terrible recovery, I’d still do sct again if it could keep me here longer. We will never know how quickly I would have relapsed if I hadn’t had it. It may well have given me extra time. I remain optimistic and hope that I will be the one who gets the long remission from ‘the next treatment’ and the next etc. I think that when the disease takes over and the options run out then quality of life takes a different perspective, but until then I just take what is on offer, cross my fingers and pray it works!
So far my light chains have dropped by 50% already so maybe Pomalidomide is the one! I will keep you posted.

Hi Maureen
Ian will have had his results by now, I hope they give no cause for alarm.
An exciting film career would be good but I’m not going to change my lifestyle just yet! The wedding is New Years Eve. We’ve not heard anymore from the disgruntled ones yet!
Our survey on the new house isn’t good so this could be a long drawn out affair! Just have to wait and see. I’m trying not to look at others yet!
Love Helen

[HelenParticipant]

Hi Andy
Thanks, I have cells saved for second sct but it’s not going to be an easy decision. I’m on the 2nd Dex night! No sign of sleep for me! Tomorrow will be exhausting. Finished the first week ok and feel well.. Bloods still iffy, risen neuts but dropped hb and platelets! Anyway not back for 3 weeks now.
I’ve spent the day making table decorations, then it’s mince pies for the Narnia/ frozen/ midwinters night dream wedding… I did tell you this was an entirely home made wedding didn’t I? We must be bonkers! But what can you do with these arty sorts who seem to think that all the rest of us technicians have to do is put their ideas into reality! Then they claim all the credit! I keep telling myself it will be lovely, if we can get past all the agro of who we’ve offended by not inviting the children we’ve never met, I ask you is a wedding really the occasion for reestablishing a family link after a 15 year gap?
No doubt this thorny issue will run for the next few weeks.
Speak soon
Love Helen

[HelenParticipant]

Hi Vikki
I’m on Pomalidomide now.. Possible sct ahead, nothing definite yet. Hope Colin continues well on the Velcade, I got just on 11 months with it, not as long as I had hoped, but nearly another year, I’m hoping this lasts longer.
Love Helen

[HelenParticipant]

hi Ali
Good to see you again and glad your mum is doing ok again, 2 months between appointments ..that would be nice!
I’m at the end of week 1 on Pomalidomide, so far so good! Dex is terrible but otherwise I’m feeling pretty normal, whatever that is!
The move won’t be until next year, got to get the wedding out of the way first.. Nearly all organised though.
The film was the daughter’s first foray into production, they came second in their category, so all very exciting though no calls from Hollywood yet, hey ho, we live in hope (or maybe in cloud cuckoo land!!)
Hi Mavis
Thanks, it was sudden for dad at the end, he had been very frail for a long time, but we were so used to him being there, doing the crossword and watching the cricket. It’s so nice to hear from you again too, how are you doing? Still in remission I hope.
I’ve just been away again, visiting friends, this retirement lark is weird as husband retired too, so every day is a Saturday now! We don’t have to go to bed early or get up early, it’s very strange!
Dear Andy
Yes I’m on dex again, awful stuff but it’s part of the price, if I get a good remission there might be another SCT .. But I don’t know how I feel about that yet, the last one was so awful. Somehow I never expected to be at this stage, I’m feeling tired but well and with failing bone marrow, I can’t quite believe it’s really at such a serious stage.. every time I have a blood test I go in thinking it will be ok and every time it’s worse. Anyway I’m back on Tuesday and hopeful that the Pomalidomide is begining to work.
Any more Greek trips planned?
Love Helen

[HelenParticipant]

Hi Maureen and Colin and Vikki
I hate this new web site!
I’m just signing in here! Just to prove I’m still around. I’ve tried to post stuff but the connection keeps crashing and I can’t be bothered to rewrite everything. ( hmmm sounding grumpy already and only just started the dex! look out world!)
No real news from me- I feel tired but have relapsed again, started Pomalidomide and dex today, so let’s see how this works.
Hope Colin and Ian manage to beat the beggar into submission.
Love Helen

[HelenParticipant]

Hi Jean
I tried a few times to reply to this post yesterday but see my reply is missing! I’ve posted a bit about my latest treatment plan and am feeling ok really. Hope you and Frank are keeping well
Love Helen

[HelenParticipant]

Hi Jan and Andy
Well the bruises are reducing a bit and the aching leg is subsiding now!
Jan, I was hoping to have followed your lead here and sort of dropped back to ‘smouldering’ for a while, you have been quite lucky I think to have been so stable for such a while.
My neuts have been around 1.1 for the last few months but dropped to 0.6 last week…hence the urgency to treat:-(
Andy, more holidays booked yet? I’m off to Amsterdam in December,all being well…pre daughters wedding, I hope she got it all sorted by then! Moving will be done slowly too as I can’t be doing with it really!
I think the interferon plan was a glimpse of the future.. We had a chat about what happens after Pomalidomide…it was both interesting and scary ..as for those of us who progress rapidly through the available options are discovering! Anyway, if I get a good response and remission with it, he will contemplate Allo graft or repeat auto. If this doesn’t work we will try some of the older treatments including interferon and continuous steroids. It is ironic when I feel fine and look as fit as a lop! Hope you are off the Dex by now, I’m not looking forward to that next week!
Love Helen

[HelenParticipant]

Hi Jan
Thank you, it’s been a bit tough the last few weeks indeed. We haven’t moved yet, just got survey booked.
How are you doing? Are your light chains stabilised? I had BMB today,(very painful :-() as mine have jumped suddenly to the same level I was at at diagnosis. I’m starting on Pomalidomide next week.
Love Helen

[HelenParticipant]

Dear Andy
Looks like it was a very good holiday ….. and thanks for the insurance advice- having been turned down by World First! After 4 years of good cover… I went to ‘Now I cann travel’ and got cover including the myeloma, with 3rd relapsing disease, for £97 so am off at the end of the month.
And David , you seem to be doing well following your awful year of ‘other’ cancers, I’m hoping you are going to get some time off to recouperate in your garden.
Love Helen

• This reply was modified 10 years, 2 months ago by  Helen.

[HelenParticipant]

Dear Eve
I’m so sorry to hear that Slim has died, he was my travelling companion since diagnosis. You have been such an unwavering, wise and stoical support to him for such a long time, I take my hat off to you.
This disease is so relentless and not for softies, but I often wished he had had an easier path.
I do hope your celebration of his life is a happy one and you can smile wryly for him.
My lovely Eve, try and keep in touch with us, sometimes it gets very difficult, but it is people like you who give people like me the energy to push on.
Much love Helen

[HelenParticipant]

Hi David and Andy
Sorry to hear about your father-in-law Andy, very sad for you both.
No news to report, off all drugs, light chains 175, slightly neutropaenic so can’t find travel insurance that doesn’t cost an arm and a leg! Bit miffed about this as am going to Marbella film festival in October ( daughter has film in!) so will have to keep fingers crossed that nothing gets any worse.
Hope you 2 are behaving yourselves and that David is convalescing nicely.
Love Helen

• This reply was modified 10 years, 3 months ago by  Helen.

[HelenParticipant]

Hi
I too am having a month off treatment, mainly as none have worked for very long for me, so I’m having a break, more bloods then see what happens. If your dad is finding it very hard going then perhaps it is best for him
Helen

[HelenParticipant]

Dear David
I’m just thinking about you and hoping that all is ok apart from the ‘bag’ and all?
Love Helen

[HelenParticipant]

Hi Maureen
I had Revlimid in 2011, right at the beginning with dex and cyclophos, it worked well and got me to zero in 4 months. Then I had SCT, relapsed after 14 months on 40 mg Revlimid maintenance daily. – treated with Velcade, Dex and cyclophos which also,took me down to zero again. 2nd relapse after 6 months took me to May this year, I’ve been on high dose steroids 40mg for 4 days then 24 days off, it takes the light chains right down but they come back each month to a bit higher each time. It is just a holding treatment before Pomalidomide starts as there isn’t much left if that doesn’t work.
We went to the same restaurant… It is very nice. I know Marazion too, it’s all lovely
Have a good time in London next week
Love Helen

• This reply was modified 10 years, 3 months ago by  Helen.

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