This topic contains 51 replies, has 14 voices, and was last updated by 
andyg 9 years, 8 months ago.
Hi Rebecca
I think it is the right thing to distance yourself at times from all to do with myeloma, there is a danger that it becomes all consuming, but we do like to keep tabs on people on here and see how they are doing! So you have to keep popping in now and again. I’m afraid I’m just getting angrier and grumpier about the whole injustice of it and the treatment not lasting for very long, as soon as I get back to fitness I drop downhill again!
I will be phoning for results on Monday and hopefully get some idea of which drug when! I feel as high as a kite on the dex so will probably be up all night now. At least all my sisters volunteered to be tested if it comes to that… If it is considered to bethebest option and one of them is a good match I think I have to seriously contemplate it, I just want to be here.
Izzie
I’ve popped a note on your other post, but I’ve just had pain killers recently for neuropathy and back pain so it’s horrid being back on steroids!
Hello Mavis
Good to hear from you, I hope you are doing well.
I think the rush to bring my numbers down is because the light chains rose very quickly and my neutrophils lymphocytes and WBC have dropped, though I’m not anaemic, he is suggesting that the bone marrow is under pressure and could worsen very quickly. When I was first diagnosed these were the worrying numbers and I was told that in my case this was the best indicator as I’m a low secretor of light chains with no pps. I have no bone or kidney signs either. They aren’t really considering CDT as I had Revlimid and relapsed while on it as maintenance and it is similar but stronger than thalidomide. I will of course give it a go if I’m not allowed Pomalidomide. We just have to try them all. I do see why holding off treatment is so vital if you go through them as quickly as some of us seem to!
Love Helen
Hi Helen.
I’ve got to say that your consultation sounded very much like the one we had with the prof. almost 2 years ago. He did scare us a bit and was pushing us towards an Allo since my bone marrow was to battered to be considered for an auto. Though in my case a match for an Allo couldn’t be found.
I had 22 cycles of Revlimid and though it kept my PPs in check it did hammer my other blood readings. So much so I was nearly always neutropenic – however you spell it! I moved on to Pomalidomide in January and though initially I had problems with sepsis my last couple of blood tests have been good. Latest – HB 114 WBC 4.1 PLTs 186 Neuts 2.8 and no major problems with side effects. So hopefully you can give Pomalidomide a go and it’ll give your bone marrow a break. Though as we all know everyone reacts differently to treatment.
I do hope you get to give Pomalidomide a try and it works for you. Personally I would give the drugs a chance before I went down the Allo route, though I would say that with no match available to me
Oh crap! Half of my post has disappeared! First I can’t get signed in now this!!
Anyway Helen you probably know more about your options than anybody else on this forum though I do suppose that could be a curse rather than a blessing at times.
My latest news is last weekend was my nieces sons birthday so we had a little party. Wednesday I got a phone call to say his sister had gone down with chicken pox! Of course I’ve never had chicken pox so have no immunity to it so today or rather yesterday I had to have two injections, one in each cheek, just in case I was infected. It certainly isn’t a smooth ride this myeloma journey!
Wishing you all the best Helen
Every day is a gift
Love Andy xx
Hi Helen, and all,
Sorry not tuned in for a while. Been trying to have a bit of normal life…..I thought not tuning in would make the myeloma bubble disappear but it’s always there in the background. Helen I’m so sorry to read that you have relapsed again. This blinking disease has no respect for anyone or anything. I keep reading about progress but it can easily lead to despondency…..but no, onwards and upwards it is! Damn it.
Colin and I had a great holiday in mauritius. It’s hard to believe we actually did it, me with a cold and Colin ending up with a chest infection…..the antibiotics and lemon grass tea did the trick though. When it’s a great sunny day like today it’s hard to believe the shadows of mm is behind there lurking. Andy right every day is a gift so trying to treat it like it! Scared to say that Colin (touchwood) seems to be doing ok.
Although not tuned in (and the signing in process is a nightmare)! I have been thinking of you all. Best of luck with whatever the next treatment is bel 🙂
Vicki and Colin
Hi Andy and Vicki
Thanks, sorry I’ve taken so long to reply, I was waiting to see what happened after the dex…..and today’s appointment.
WELL,!!
I had another blood test the day before the dex started… These results were a bit better than the previous set! So may be a blip! Anyway I’ve had the 4 days dex.
So more bloods today,
NO more treatment for the next 4 weeks and then just dex again and we will wait and see what happens. All sisters have been asked for their blood to tissue type. I will think about that one if there is a good match but not until then. I’m with you I think Andy, I’d like to try the drugs first. But I’m fit now and maybe if I had an allo when fit I would be better overall…oh I don’t know what to think!
I feel as though I’ve been put in a state of suspension, as soon as the bloods slip again, then it’s the full BMB, X-rays, genetics etc, but for the minute…… Nothing, so I’m off to London tomorrow for a birthday treat, party on Saturday and I still feel well, an unexpected reprieve!
I’m just keeping my fingers crossed
Love Helen
Hi Helen
So glad to hear your blood readings were better this time. It is a roller coaster isn’t it! I remember you saying that once before.
I will hope and pray that the drugs will do the trick and bring the numbers down. I can see that the thought of an allo is so enormous. I do hope you find another way through. If only you can stave it off there will be other things that are currently in the pipe line.
If they can do all this tissue typing prior to an allo, you wonder why they can’t do a profile of your blood to choose the best treatment.
Keep finding things to look forward to, even if they are only little!
Lots of love.
Mavis xxx
Kalimera Helen.
Sat in the Greek sunshine.
Just read your post and I can totally understand your dilemma about having a transplant. I tried putting myself in your shoes and I couldn’t come to a completely satisfactory conclusion as to the drugs versus transplant argument. I know when I was told I couldn’t have an Allo I was gutted but that was two years ago and I think I’ve had two goodish years. Would I of had those two good years with an Allo? Unfortunately it’s impossible to tell. Hopefully your bad reading was a blip and you have time to consider everything fully, as I know you will, and come to a decision you are fully happy with.
Have a great time down London.
You can be sure we all have our fingers crossed for you.
Every day is a gift.
Love Andy xx
Hi Helen
I am so sorry to hear of your relapse, I haven’t been on the forum for ages (a combination of not liking the new format and my life just running at such a frenetic pace). Like you, I was devastated by my first relapse, you eventually get your head round it and now you are facing another one. I hope whatever treatment regime is decided upon works to get you back in remission, it sounds like there are some good options and then you can consider the allo or second auto. I am in a similar position but trying to spin out low dose velcade treatment to keep me in remission until September (12 mths of treatment) or thereabouts when I’ll have a second auto possibly followed by a RIC allo. Thinking of you
Wendy
Dear Mavis
Thank you, it’s all very difficult isn’t it. I think we are still a long way off individual tailoring of treatment, due to the erratic differences between us all, but we must live in hope.
Hi Andy, you must be back now? Hope you managed to soak up a lot of that lovely Greek sunshine, I think I might have to book another holiday as soon as possible!
I had a fantastic birthday! Treated to all sorts, opera, diamonds and meals out and a family bash. I have been ‘spoilt rotten’ as they say and it continues as the husband also clocks up the big 60 next week…. So party party party!
My last bloods were a bit mediocre, but I’m not back to clinic until mid June so I’m making the most of our birthday season and trying to put it all to the back of my mind!
Hello Wendy I’ve been wondering how you were getting on on the Velcade, it’s very much a case of getting on with as much as possible I think, I will keep you posted, my sisters have their blood packs now, no allo for me unless I have a really good sibling match, and I can’t decide what to do even if one of them does match…. It all sounds so daunting. So good luck to you too.
Love Helen
Hi Helen, Just wanted to say love your latest 2 fabbie photo’s, is 60 the new 30? Is dex the hidden beauty treatment that nicely plumps up and smooths out skin? if so, let’s keep it to ourselves eh?
Rebecca
Hi Rebecca
Ha ha ha ….well! I didn’t like being 60 I’ve opted to stay 48! Come to think of it I’ve never looked ill! In fact I’m apparently a picture of health ! I was told last week that I looked worse before my diagnosis than now, so who knows…. Steroids all round….
Love Helen
Hi Helen
That really is a lovely picture. My Mum has the same problem!, she looks really well and you would never guess her diagnosis. Did you have a lovely birthday?
Love Ali x
Dear Ali
Thanks, I had a fabulous time, I’ve been treated like a proper princess! Tea at the Ritz and all manner of treats. Best of all, I feel well and have actually made it this far. And I’m still at work!
How’s your mum getting on?
Love Helen
Really pleased to hear it Helen! Tea at the Ritz , ooo I say! Its my 40th this year and im wondering what special treats I will be getting from my hubby, probably the usual last minute rush to Asda for pj’s, a book and a pack of 5 pants. One friend was whisked to Las Vegas and another got a range rover, so I would like something similar! Hehe, I will let you know!
Mum has been told she is out of remission, we are devastated. So we are buckling up ready to jump aboard the rollercoaster again. Cant understand it though, pps are at 4 and BMB was ok. Its the plasmacytoma that has popped up that has caused the need for treatment. So Velcade is to start on Monday and Thursday (2 weeks on 1 week off) is that the usual?. After the Velcade she is to move straight on to 2nd SCT, that upset my Mum more than anything, its all very fresh in her mind – she had the first in Aug 2012. Only 1 or 2 sessions of radiotherapy are required now as the chemotherapy will work also on the plasmathingy. Shes also to have root canal work, and that has to start before she can have the oral equivalent of Zometa. Shes been advised not to have the tooth removed, yet the bugger in question is right at the back and anyone else would just have it out. So all in all we are pretty p***ed off, and I for 1 feel that this is such an injustice. Hey ho, whatever it takes she says. Sorry for the rant…..you did ask 🙂
Any tips for when on Velcade would be greatly appreciated.
Anyway, bathtime in this household, catch you soon
Love Ali x
Dear Ali
A 5 pack of pants- now that’s extravagant! Seriously, I’d drop some pretty big hints, the sooner the better- more chance to get it right!
What can I say, relapse takes a while to get your head round and Velcade was a difficult one to endure. I had 2 Velcade injections per week for 2 weeks then a week off, I also had cyclophosphamide and steroids.
I managed to work and do normal stuff for 4 cycles before the pain and peripheral neuropathy became too unbearable, then I was reduced to 1 injection per week.
The Velcade day was ok until 5 hours after I had it then I ached and needed to sleep for about 12 hours.. The next day I was tired and gradually improved, ok next day then started over again. It seemed very cumulative. I also had the usual steroid fatigue and cyclophos nausea and hair loss sadly. I still have some residual neuropathy with 1 really tired day in 4, the rest of the time I’m ok. The dental work has to be done ASAP and conserving teeth is definitely the best treatment in my opinion.
I do hope your mum gets a good result from the Velcade and can get second SCT out of the way soon. I’m still on watch and wait for a month.
Speak soon
Helen
The topic ‘Back on the roller coaster’ is closed to new replies.
