[HelenParticipant]

Hi Jan
The mystery of the myeloma numbers! Long may yours stay down. I went back for more to be taken today and have my fingers firmly crossed.
Hi Stanley
Welcome from me and thank you. I hope you sail through the treatment and get many years of event free time. Try not to worry about tomorrow, just get the most out of every day.
Hi Andy
Sorry about the delay, I’m just back from a few days in the Lake District, little walks round Derwentwater and Keswick with old(!) friends, very pleasant. Couldn’t afford to buy Blencathra though. All I did was moan a lot! Being very anxious about my clinic visit today.
It looks like the mm has morphed from ‘indolent’ to ‘more aggressive’ now! The meeting today was to discuss options. It went a bit like this….

No bmb… Assume high light chains and low neuts mean active disease! Unless you really want one there is no real need…hello.. would I say yes at this stage?
Have I thought about Allo transplant….. Well no? ….. You should think about it now! Do you have any siblings? You do, well we’d better test them all and see if there is a match!
We won’t consider a non related match as the process is very difficult, but in the meantime we must get you to remission.
We will try for Pomalidomide to start next week, meanwhile start the steroids tomorrow! You can have next Tuesday off as it’s your birthday and pick up the drugs on Thursday! Phone us on Monday for the bloods from today, we should start soon! If this doesn’t work it’s Bendamustine
We left! Shell shocked again! And an awful lot to think about.

I have been thinking a lot about you in all this as you have had constant treatment too. I’ve had the last 3 months off all drugs and it was great! I’m getting used to the idea now.

I’m definitely stopping work, much as I love it, my time is looking more precious every day.
Love Helen

• This reply was modified 10 years, 6 months ago by  Helen.

[HelenParticipant]

Dear Rebecca
Thank you, ‘the messing with ones head is a serious problem’ and I consider myself relatively lucky in this direction! I have been angry a lot of the time! I find that the inability to plan more than 4 weeks ahead crucifying sometimes, and I get very jealous of people who book things or send me invitations that are years away!
Also it is hard to vent repetitively on ones family and friend! One of the best things about this site is that you lot out there either do, or will, in time, understand what I mean, and you bother to reply, knowing what a lonely road it feels sometimes. You have to keep ‘making the best of things’ otherwise you would be sitting in a corner somewhere, rocking from side to side, and not even the most devoted of partners wants to have to deal with you like that!
I’m beginning to realise that ‘treatment free’ may be a faint hope and that in order to squeeze every ounce out of life, I have to endure round after round of treatment until it fails to work. I’m not being depressing here I hope, only realistic about my future, as we know we will be very different from each other. I do wonder a bit about what is in store!
I have stem cells on ice and IF another SCT is thought my best option, I will take it.

Dear Jan
How are you? Are you still well?
I don’t know about the Velcade first route, still to random a set of results as far as I can tell. I think the only thing that is working for me is the high dose steroids…. The rest probably slow it down but I get miraculous drops within the first few weeks then early return by current standards, who knows! I’m very lucky, with a good haematology team on the doorstep, but…..
I’ve spoken to occupational health about ill health retirement… So it will happen… Soon!

Dear Megan
Thanks for your good wishes, I will lets you know what and when and how long, when I know.

Hi Ali
Yes it’s a pain, ( in my back) I look better today than I have for years apparently! I know this as I was at a christening earlier today and someone I’ve not seen for a while said so! Maybe I will change my picture later 🙂
And no I had no idea I was relapsing… Nothing changed except the blood results have quadrupled in 8 weeks! It’s a b***** . At least I held off booking for New Zealand!
The wedding will be New Years Eve. But I’m not thinking about that! It’s too far away

Love to you all
Helen

• This reply was modified 10 years, 6 months ago by  Helen.

[HelenParticipant]

Hi Maureen
Thanks.
I have no idea! I was one of the unfortunates that got huge problems with the SCT that I think they are a bit reluctant to jump in again, my numbers also started rising slowly only 14 months in, so not a brilliant response. They say they will go for it again if needed though.
I think it will be pomalidomide but I haven’t had thalidomide. That might be the first attempt.
Glad you enjoyed your little jaunt to Darlington.
Love Helen

[HelenParticipant]

Golf then! ….Hope you have a lovely break
Helen

[HelenParticipant]

Hi Rebecca
I’ve not heard that but it’s a possibility, my consultant is thinking I’m really only responding to the steroids :(, hence the rapid drops and quick return. Hey oh it’s just wait and see! I went from 690 to 60 in one cycle and was down to 12 after 3 months. This time it was 155 to 40 in one go! The ratio has never been right until January this year.
As for the hair… Well mine came trough very curly and one black to one white… But very very dull, hence the colour, now , underneath my ‘surfers’ mop it is brown again, I lost over half my hair this last round of chemo… Cyclophosphamide effect, more brown hair has returned though.
Dick, when you get your hair back you could be 3 tone!
Helen

[HelenParticipant]

Darlington? Do you have any plans to go any where else? You could have a trip to Richmond or Northallerton for lunch.
Helen

[HelenParticipant]

Hi Ali
That’s all right then! I’m afraid that I’ve become a lot more ‘blunt’ recently …. I used to be fairly tactless, but now it’s total!…… I blame the disease!! Has your mum heard anything yet?

Hi Mavis good to see you are still in remission. I only just requested early retirement, it hasn’t happened yet, I’m hoping to go another few months yet but got to see what occ health say, no doubt these things will take some time.
Love Helen

[HelenParticipant]

Hi DickB
Sorry your results aren’t as good as you’d have hoped, but the advice you have had so far sounds reasonable.
And Rebecca… I too have no M spike, only IGA lambda light chains, when I was diagnosed they were at 690 only but I was dreadfully anaemic with 40% myeloma on bmb.
My response to induction treatment was quick and I went into SCT with 4 months remission behind me. I was in complete remission for about 14 months when it slowly crept back, light chains at 155 when treatment started again a year ago.
The plan is to leave me for the time being and see how long this remission lasts. 5 months so far, no SCT planned yet as the last one didn’t last long and I had a horrid time after it.
I’m not hung up on the numbers any more…. It becomes too invasive and I found it messed with my head a lot, I will get them next week … It’s soon enough.
One thing I have now come to realise is that my future may well be one of 6 months on treatment then some months off, until the drugs stop working. This has taken me a while to come to terms with, and I still optimistically hope to have much longer before needing treatment again.
You just have to pack as much living into the time off treatment as possible.
Helen

[HelenParticipant]

Hi Izzie
First time I’ve been called a couch potato!
But yes moving helps a lot but when you can’t stand on your feet without it feeling like you are walking on marbles it is very difficult.
I worked full time after my relapse until I’d finished the 4th cycle of Velcade twice a week, then the dose was reduced to once a week but I found the discomfort in my feet really got worse after the 6th cycle. It’s now 5 months since it finished and most of the time I’m back to my usual pace, but I still feel like I have stones in my shoes a lot of the time. I’m back to work again but I’m not as good as I was despite my best intentions.
Just grab the time after the SCT one do as much as you can.
Helen
p s Tom your old twinkle toes! just don’t let them get too sore with the Velcade

[HelenParticipant]

Hi Izzie
The pain from peripheral neuropathy is horrendous! I found I had to keep my feet up and rest my legs a lot of the time and took all the painkillers and the psychotropics all the time.
Good luck with the SCT
Helen

[HelenParticipant]

Hi Poppy
If it were me I would do as Sarah just said and ask the nurses, listen to what they say and ask what they would do if it were their Gran. Then I think I’d bring my holiday forward and go anyway…infections are very unpredictable but when your immune system is failing then they are even more unpredictable.. That way you might get some really good quality time with her. I remember when my bro in laws mum was ill, I thought she looked a bit worse than I expected so rang him up and said so, he hopped on a plane that day and came over from NZ, they had 5 very precious days together before she died.
Use the time you have.
Bless you
Helen

[HelenParticipant]

Hi Ali
I’m sorry, was I too blunt with my post? Rereading it it seems very bald, though I’m not sure how else to say it! It still might be nothing but needs checking out thoroughly. It’s good that you’ve not been driven by the numbers too, I’ve not asked for mine for a while, I’m just enjoying life between appointments.
You will be happy to hear that I’m taking the bull by the horns and retiring in September, though heaven knows what I’m going to do all day. I hate housework! Maybe I will make bespoke knitwear!
Love Helen

[HelenParticipant]

Hi Ali
I think its good to just pop in now and then, it means you are finding other things to do! Like holidaying with your lovely boys!

Plasmacytoma might mean increased myeloma activity in one of the bones….worth asking if this lesion is new or was present before on previous bone scans and has changed. Either way your mum should be on close watch again.
Love Helen

[HelenParticipant]

Hi Stuart
The photos I posted a couple of weeks ago will not let me edit or remove or resize them….. So it looks like an idiotic post… Can you fix it please?
Helen

• This reply was modified 10 years, 7 months ago by  Helen.

[HelenParticipant]

Hi Eve
Have sent you message, hope Slim is sorted soon? When do the family arrive?
Love Helen

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