[EmmaParticipant]

Helen,

I've not been on here for a while and am just catching up now. Sorry to hear relapse has been confirmed, however it ends the limbo period of uncertainty. I'm glad you feel generally well and hope they can get on top of your pain ASAP. I look forward to reading that Velcade does the trick for you and hammers the nasties back into remission. Positive thoughts and hugs coming your way.

Love Emma. Xx

[tomParticipant]

Aww Helen

Am, sorry you got the confirmation about the relapse 🙁 big hugs to you (hug)

And as for all over the place you are entitled to a bit of that but it will soon be time to take the new challenge on and go down a new route.

Fingers crossed for you Helen 😉

Love Tom Onwards and upwards xxx

[VickiParticipant]

Oh bugger Helen

I really thought your last post was so positive and that may be it was a blip!. How come they have changed their tune so quickly. As Tom said entitled to some soul searching and then bat that damn thing right back into oblivion!!

Its such a blow for you:-(

Love and hugs

Vicki and COlin xx

[jmsmythParticipant]

Hi Helen

So sorry that it is a relapse and not a blip. Weird thata you feel so good. Maybe that's an omen that you will,have lots of energy for the next round 😛 you have such a positive attitude, I have everything crossed for you

Love Jean x

[AliParticipant]

Helen,

I'm so sorry to hear its a relapse. You are more than entitled to have an all over the place head. Once its straight again , focus and give it some wellie.

Like Tom, I'm sending a very large hug your way.

Flipping heck, you feel so well too, what's that all about?

Love Ali x

[HelenParticipant]

Dear Emma, thank you, I hoping the same, you just get your optimism back and you get smacked down again. I hope your mum is continuing to improve, is she out of hospital yet?
And Ali Jean and Vikki I don't know why they decided to treat straight away, it seems to have been a group decision, weird non typical cells + myeloma cells and no pp and low sflc, the plan is to knock it back now, velcade might work better apparently. No plan to do second ASCT as had such catastrophic time with last one. 'Save it for a rainy day' he said. I'm very well now so might not be brought too low with the velcade? I'll let you know on that one.
Tom, am still giggling over onesie! ' who bought one with skeleton on it? Very dark sense of humour in your house! Mind you sometimes black humour does keep you going, my daughter asked why I was wearing best boots for work! I said I needed to get the wear out of them! She was mortified to start with ….. Then said, well I had hoped to inherit them in good nick! We both fell about laughing.
Thanks for the hugs, all much appreciated
Love Helen

[MothasParticipant]

Helen, the relapse sucks.
Of course you're all over the place.

As far as treatment is concerned I think the consensus in the UK is to go in hard and early as possible. I'm showing nothing in my bloods, urine or BM but they're basically giving me the full bazooka.

big hug from me too.

tom

[BabsParticipant]

Hi Helen,
I've not been on here for few days due to getting over my chest infection and since Tuesday a frozen shoulder,seems so insignificant in comparison to your relapse, so sorry to read of this.
Lots of cyber hugs to you from me.
Love Babs

[janwParticipant]

Hi Helen

I'm really sorry to hear your myeloma has relapsed. It's no wonder your emotions are all over the place, it's completely understandable.

I think it was very fortunate your consultant recommended a bmb otherwise any abnormalities of cells would not have been identified so early. At least with you quickly changing your treatment to Velcade, then this will be able to try to tackle the myeloma more effectively. When my light chains jumped from 600 to 800 after a cold virus, I asked for a bmb but my consultant just shrugged his head and said it wasn't necessary. I still don't understand why he said no ….. I'll have to push harder at my next consultation.

My consultant does think Velcade is the most effective UK drug for light chain myeloma. Hopefully, he is proved correct and you start to see a reduction in your pain and light chain levels.

Lots of hugs.

Jan x

[VickiParticipant]

Good luck with the velcade Helen!,

If its caught early maybe it can damn well stay down down down 🙂 very thoughtful you are about your boots for your daughter!! You'll need to get Another pair as you'll wear these out damn it 🙂

Vicki and Colin x

[EmmaParticipant]

Hi Helen,

Mum came out of hospital 3 weeks ago and came back home. She's doing really well. It's taking time for her to settle and build her confidence again after 4 months in hospital. She had her appointment with consultant this week and we received the good news that CDT has done the trick and now she's on 3 monthly checks. We are all very happy, though for me it's bittersweet as you just never know when it will raise it's ugly head again.

Love Emma. Xx

[eveParticipant]

Hi Helen

My feelings is hit it hard,Velcade worked for Slim,I would like to see maintenance with Velcade,they know for some it stops working!!!!,Slims on your tail,another BMB on 7 then wait for consultant on 24 for decision !!!

Good luck Helen get the Palmers cocoa butter formula and tell hubby massage every night,just do not tell him it's on your feet,helps with PN. Love Eve

[HelenParticipant]

Dear Tom
I do hope you are right, I'm really not relishing starting over on this palaver again, but if it knocks it back then i dont really have an option. Are you fattening yourself up before stem cell collection? I do hope so, it is quite a rigorous procedure.
Emma just use the time with your mum while she is well, it is hard but you have time now. Take it.

Babs and Jan, Emma, Vicki and Eve thank you, you all help so much in the dealing with this situation, I'm so glad you are all out there. I am resigned to it now …….but I had a terrible realisation earlier this evening and now we have to get down to some serious thought, and yes I probably am vapid and vain, but as fellow lady mmers and women you will totally understand my next WAILING cry :'-( :'-( :'-( :'-(

Just what am I going to do about my HAIR.??? as you know from my many earlier posts, after SCT, I went from being high maintenance brunette woman to fabulously expensive blonde! All in the name of recovery, improving mental health etc. …no seriously….. I was relatively chunky with shoe and handbag habit and dropped to svelte size 10 so needed whole new wardrobe and new hair as re growth was no longer brunette but faded dull brown with grey streaks.
So ….. Lots of bleach, choppy little cut et voila ! Done! Blonde having fun!

Now what! I can't have bleach! Or hairspray ..or harsh dyes….. Or can I?….. Does anyone out there know how or what to keep the ash blonde or do I have to go grey? I think I need answers soon or will have to have head in a bag for 6 months!

And yes Vicki, I will be buying lots and lots more boots and Eve, Its rough on Slim having all the BMBs but i'll keep my fingers crossed for him……… and ……that sounds like a very risqué suggestion with the cocoa butter:-D
Love Helen

[EvaParticipant]

Dear Helen,
Just to let you know I'm thinking of you and sorry about what you're going through.
I've done another post on Velcade today you might find interesting.
Best,
Eva

[bandityogaParticipant]

Hi Helen

Sorry you have had a relapse but try to stay positive. I will put up a prayer for you.

Love Maureen x

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