This topic contains 116 replies, has 23 voices, and was last updated by 
Ali 11 years, 4 months ago.
Well, I've been to the clinic,
On the upside ….sflc are down from 113 to 94, a plateau,
On the downside neutrophils 1 so might need some gcsf.
On the down side Bone marrow trephine has had to be sent elsewhere as there was some problem with it which I failed to catch but might be technical only?
On the upside, bone marrow aspirate showed only a few plasma cells so may not be definite relapse…. Yet.!
On the down side.. More Back pain so need an MRI and more painkillers
On the upside peripheral neuropathy is no worse
On the downside I lost my parking space at work, ……this is hurting the most>:-( in fact it is so difficult I don't want to go anymore:-(
On the upside I get an extra week off Revlimid, I feel great and there is no imminent change of treatment.
The ups and downs in the limbo of uncertainty and another week to wait for all the results.
Love Helen
HI Helen
i hope you start to get more ups than downs i hope you get your parking space back it must be difficult to work as it is with a bad back hope you are sorted soon
love jo x
Hi Helen
More more ups than downs pleaseA :-D. Hey why did they take your spot of you damn cheek !! Hope all comes right
love Jean x
Hey Helen,
Focussing on all the ups…plateauing and only a few plasma cells…..that's got to be good. This could be a blip after all. You know what parking at work, a bloody nightmare….can't you get a medical bay space? Especially if you are in a lot of pain and walking a long way is an issue? No imminent change of treatment….that's good for now eh 🙂
Jean, how are you and frank doing 🙂
Vicki and Colin x
Hi Vicki
Frank is doing ok – I think :-S He is getting his appetite back. Eating small amounts but few times a day. He has had a G& T, Guiness atnd beer. Hasn't got the taste for wine back and vegetables, he won't touch them. Doesn't appear to be putting on any weigh. Going tomorrow to see consultant
How is Colin now?
Best to you both
Love jean x
Hi Helen
We have very similar seats on the rollercoaster! I think the news is mostly good but its all relative to what stage you are at. The main thing is like me you are feeling well. The neutrophils probably due to the revlimid so maybe the week off will sort that out.
I'll be having a light chain test on Friday so back in the land of uncertainty!
Wendy
Hi Helen
This seems like good news, no new treatment yet and not a definate relapse:-) I'm really happy for you. Just sorry you have to wait for the results:-/
What's happening with the parking space? Have you lost it for good? I can understand you not wanting to go, especially if you have far to walk before you even get to do your shift, the stress of finding parking also awful. I feel for you about it.
When's cornwall?
mums also got a lot of back pain at the mo
Love Ali x
Hi Helen.
Oh the joys of MM. As you say it's a roller coaster of a ride this journey of ours. There are reasons to be optimistic – plateau, few plasma cells etc. as for the back pain hopefully that's just a consequence of over use. Neutrophils 1.0 that's the norm for me.
You say you feel great at the moment well to me that's a good indicator that the MM is not back with a vengeance and hopefully the Revlamid will keep you on that plateau for some time to come.
Waiting for test results is always a worry but unfortunately there's not much that can be done about that.
Every day is a gift
Love Andy xx
I empathise hugely.
Tomorrow I see my specialist, I try to put it to the back of my mind before I actually cross the threshold of the hospital. But it's hard not to run through a few scenarios beforehand.
Lost your parking space. Not good, no tablets for that I'm afraid.
all the best
tom
Hi Helen
Lets hope you find the key
Slims bloods are good,even kappa light chains showing rise,but on the 7 May it will be 3 months from the last BMB he will have another ,then the wait until 24 May for results. 10 percent three months ago.i wonder what it will be in 3months and 3 weeks.??? It is hard to just have BMB as marker,.
They do not have to keep saying it is unusual ,
Fatigue through lack of sleep springs to mind,no ups and downs, do not know which is worst knowing or not knowing.Love Eve
Hi Helen
Well well done on the good bits 😀 and am sure the bad bits will get better 😉 .
It is that Roller coaster that we all dread aint it.
As me ole Aunt used to say "Get some more Veg in ya itll mek ye better (as bloody if lolol)
Love Tom Onwards and Upwards xxx
Hello Jo, Jean, Vicky, Ali
I apologise for the bulk nature of this reply, but thank you so much for your cheery replies:-)
I got the parking space back!….. And a little note from personnel asking how I was!
Jo are you managing your new treatment well or is it very exhausting?
And Jean I hope Frank continues to improve? How is the footy? Watching enough of it?
Vikki has Colin started to take things more slowly again?
Ali I can fully sympathise with your mum, I've had pain in my back for years …. arthritis caused by lifting all those patients back in the day before hoists, so I wasn't really sure if it was worsening until recently. Anyway, MRI scan next week to find out if any hot spots. Cornwall is the 3 rd of May then Glastonbury in June, (we are dropping our kids off there, mind you I wouldn't mind a bit of glamping, one of my work colleagues is gigging there too this year, probably on a different stage to the stones but hey it's a start! , anyone got a spare ticket?)
Dear Wendy, Eve, Tom, Andy and Tom
Am only a one finger typist on this iPad, and these posts take me ages to do, hence the brevity of them, and don't want to drop iPad in bath, ( most comfortable place for bad back after work :-0 !!!!!)
Hope your results are good on Friday Wendy, you can certainly sit in the seat next to me on this roller coaster, how are you getting on with work since the change of circumstances, I'm seriously wondering what to do next. Unfortunately I don't want to give in but I do wonder.
Eve The upsii- downyness and not knowing is hard, apparently neuts were last normal in June and just dropping slowly since. I can understand your worry about Slim, just get off in that new van, you can always come back if he gets ill.
Tom.. It's funny about trying to forget, as appointments get closer the anxiety steps in and you just can't help it, I think that's why I've not asked about my results recently. I've enough other things to get on with. Hope your appointment went well today and bloods are good.
Andy… it's really interesting that after a week in the sun the sflc's went down a bit. More holidays then! Will you be around Newcastle at all?
Veg are the only things I really like eating now Tom! And I'm not on face book so you must post photo in onesie on here for my delectation?
Love Helen
Hi Helen,
Yes colin has started to take it easier, a little less tired but is sleeping when he needs to. Got back pain at the moment, he's reduced his meds due to it being morphine based and the pain specialist is going to give him another drug which is not morphine based and can be Taken long term. I do worry about any pain as I always link to mm but we have the hospital appointment Tuesday so fingers crossed! Glad to hear you got your parking space back…..hr must have felt guilty because you got the note as well 🙂
Jean and frank, glad to hear he is coming along well must be a bit better having a g and t!. I think it will take a time for frank to put on weight but s long as he is eating a little and often then that is ok . As above Colin is a little better, but I can't stop worrying. His back is bad and he is tired…..I worry About myeloma coming back s so many have relapsed so soon. Fingers crossed for Tuesday 🙂
Vicki and Colin x
Dear Vikki
I'm glad he's slowed down a bit, I think it's still early days for doing a lot.
It is really hard to know what each pain means, I worry the same way, I have been told endlessly, I have no bone involvement, but I have a small hole on X-ray of my arm and increasing back pain, nothing is standard and the report says its not a myeloma lesion, but my arm hurts there, and has done for 6 months, anyway now that the sflc are going up MRI is the next thing and a decision on mm increasing its activity again.
Yes the parking thing was awful, they changed the signs without anyone telling us! Anyway a really nice woman in HR sorted it for me but it was soooo stressful, I get much too anxious over small stuff since all this treatment and disease started. Anyway, I'm off to a 60th party tomorrow and today was a sunny day so my optimism is coming back a bit
Love Helen
Clinic today, relapse is definite, off Myeloma xi trial and start VCD on 20th May. Don't know how I feel now, physically well, mentally all over the place
Helen
The topic ‘Lightly chained to the Roller Coaster Ride’ is closed to new replies.
