[HelenParticipant]

Having spent the last few weeks enjoying a plateau on this ride, I have learned today that I have relapsed again.
I go to ‘explore the treatment options’ next week.
I am totally devastated again
Helen

[bandityogaParticipant]

Sorry to hear that younhave relapsed. Hopefully you will get treatment which doesn’t have too many side effects and will give you a long remission.

Would you go for another SCT?

Maureen

[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

[rebeccaRParticipant]

Hi Helen, sorry to hear of your relapse so soon. I have never got “angry” about getting this disease, guess I was more shell shocked and didn’t have the energy to get angry but now when I hear of relapses like this it makes me so angry. The cancer ward is always full of really nice people and families and it’s hard now not to wonder why. Guess all cancer’s a bit of a mind **** but MM certainly seems to take the biscuit. At least there are still options for you out there and they are growing in number. Do you have stem cells on ice? Perhaps SCT’s are like everything else in myelomaland and no two are the same. They say you get half again on your second SCT and then you always hear of some who got twice as much on the 2nd
Rebecca

[janwParticipant]

Hi Helen

I’m really sorry to read that you have relapsed. Have your light chains jumped considerably, or are they slowly climbing upwards? You must be so worried and anxious about starting another treatment. It’s such a shame that you couldn’t have a longer period of remission for your body to recover before you start more drugs. Do you think you will carry on working or consider the early retirement which you were thinking about?

Hopefully, one day soon there will be sufficient research available to determine which drugs have a better chance of working for our specific type of myeloma. I wonder when Velcade is not being used prior to SCT, what is the average remission period? I remember Dai suggesting last September that from comments made on this forum, he suggested Velcade only appears to achieve 6months to 12 months remission period. Perhaps there is a national remission figure published for this drug?

I hope you manage to remain positive and hope your next treatment is very effective.

Love Jan x

[meganjaneParticipant]

Hello Helen,

Sorry to read about your relapse, I hope the next treatment has few side effects, works well and gives you a longer remission.

Megan

[AliParticipant]

Oh Helen
I’m so sorry to hear your news. I cannot believe it and don’t quite know what to say. The medics will have a concoction lined up for you know doubt. Did you feel like you were relapsing? Or was it an unpleasant suprise?

Just look forward to your daughters wedding. Whats the date?

Sending you a big hug 🙂

Love Ali x

[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.

[janwParticipant]

Hi Helen

I think you have coped so well continuing to work whilst going through a second round of treatment, especially with the various side effects which you have suffered. It must be so difficult balancing your work, family and myeloma treatment. Hopefully occupational health will come up with a good retirement package for you to consider taking in the near future.

I’ve been very fortunate, managing to just avoid starting my second round of treatment earlier this year. When my light chains recently reached 1,000, my consultant recommended a full skeletal x ray which thankfully showed no further lesions or bone damage since 2010. At the same time, my light chains decreased to around 740 which I thought was a blip, because I had been on a short course of antibiotics for a sore throat/high temperature, but my last blood tests showed another drop to around 700. I’m totally confused about my fluctuations in light chains, but obviously relieved that I might have some more time before I start treatment again.

As you say, it’s difficult to plan ahead when you don’t know what is happening to your health and how your body will react to treatment. In January, when my consultant was discussing my next course of treatment, I was trying to work out whether I would be well enough to attend my son’s graduation ceremony in July as well as sorting out my elderly father’s arthritis needs for his mobility problems such as a stair lift, grab rails, occupational therapy, physiotherapy and many consultants visits before any side effects kicked in.

Take care.
Love Jan x

[stanley-1960Participant]

Hi Helen,

I am very sorry to here the news of your setback and hope that a new regime of treatment is organised as soon as possible. Reading your posts gives an insight to the frustrations and emotional turmoil that all newly diagnosed  myeloma sufferers will surely face in the future. The title roller coaster is the most accurate way of explaining the myeloma journey for us all.I do hope you will soon be heading for the top of the next peak very soon. My initial diagnosis was quite possibly the worst moment of my life along with the first month post surgery. I am slowly realising  with posts like yours i have further emotional hurdles that need to be tackled. I am currently on the top of the big dipper cycle 1 CTD completed today with a few small up and downs on the way. But by the laws of gravity what goes up must come down,i just hope i have the strength to get through the lows which will surely come. This site and the people on it are an excellent source of information and inspiration to newly diagnosed myeloma sufferers like myself. The lonely road you mention seems to disappear on this site as we are all on that same road together and i believe empathise with each others situations based on personal circumstances.

All the very best for the future,

Stanley

[andygParticipant]

Hi Helen
Sorry to hear that you’ve relapsed. You really have had a hard past few years.
Speaking as someone who doesn’t know what it’s like not endure the round after round of treatment, except brief spells when I was to ill for the treatment, I get really jealous of those who go into remission. As you know I’ve been through the myeloma handbook of drugs and the only one that’s had an effect so far is Revlimid. Though Pomalidomide looks promising. So I’ve had just over two and a half years of pill popping and I’m running out of new pills to try. My consultant says Pomalidomide isn’t the last treatment I can try but I do wonder what’s next! I suppose it’ll be a trip up to see your Prof again.
I think planning things is really difficult people keep saying “oh do you have any plans for Xmas” and I say to myself “only hopes I have for Xmas is to be alive” but I keep it all to myself. I try not to plan things more than a couple of weeks away. Though something’s have to be looked at longer term and I just reply I’ll do it but depends how I’m doing at the time.
Sorry I’m starting to ramble! Steroids.
If you do go onto Pomalidomide I can report side effects wise I’m not having any problems now. Though it did hammer my bloods initially, resulting in two stays in hospital, my bloods now are the best they’ve been since I started the myeloma gig. Hopefully they’ll stay that way because it’s Greece time of the year again. We go on the 18th if everything stays ok.

Good luck Helen.

Every day is a gift
Andy xx

Ps. I know you would rather stay working but I think not working will be good you. Fingers crossed xx

[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.

[rebeccaRParticipant]

My goodness Helen, don’t know what to say. Except you sound as tho you have a great consultant and are not restricted by the path I always get quoted thalidomide then revlimid. Is pomalidomide a trial at your hospital? Allo – aargh – but if the future looked bleak I’d do anything to prolong it and while we may consider this absolutely huge, as it is, in the US it is done frequently, if not routinely, for high risk patients and on the myeloma beacon there are many who have fared incredibly well after it. I was 50 when diagnosed and wondered if I could have had an allo, my kidneys rule me out now, for a while I used to think I was glad I couldn’t do the allo route as I know I would have taken it, regardless of risks, if offered. Now I really wish I had it as a back up plan for an early relapse. People always say “quality of life” etc but to be honest, with a family, I’d take much less QOL to stay part of it. You have a lot to think about but not really much choice if you choose “life”. You’re in a really scary place but they have thrown you lifelines – I hope you grab them and hold on tight. It is so true now that life shrinks or expands in proportion to ones courage. I have read Jet Blacks blog who has had an allo and, its fair to say, has suffered some GVHD but I do remember her saying the allo wasn’t as bad as the SCT – and she is still here and enjoying life despite some of the setbacks. You must be back to being totally consumed by this “thing”, how did we fill our brains before? I am now trying to set aside a small time each day to think about MM/trawl literature etc then close it off as tho my job is done for the day! It’s hard to do/stay disciplined but am going to stick with it as altho it doesn’t “consume” me anymore it still permeates many thoughts. Best of luck Helen

Rebecca

[IzzieParticipant]

Dear Helen

Just read your news and your consultants visit. You do have a lot to think about but it looks like they are ‘not allowing the grass to grow under your feet’ and have got you sorted out with a new line of treatment. Please let us all know how this is going when you get started – I know what you mean about being off the drugs. I have not had the chemo/steroid regime for some time – am only on strong painkillers for the dreaded neuropathy – so felt I was just started to pick up. Now in hospital for the SC relacements this afternoon – and all the medication starts again – how they all interact with each other – I don’t believe they truly know – but we have to leave it in their ‘capable’ hands. Hope this regime does not take it out of you too much and is more than tolerable, I know I have thought sometimes ‘is it worth it’ but I try not to dwell on this negative thought too much and must truly believe that it is worth it! We didn’t ask for it so the powers that be must have thought we had the strength to deal with!! Gosh I,m doing a lot of rattling – I will put it down to the medication – ha ha
Good luck and my very best wishes
Izzie

[mhnevillParticipant]

Dear Helen

I’m really gutted to hear your news. It just doesn’t seem fair. Mind you, who said life would be?!

I know it seems a strange question, but does there have to be a mad dash to have more treatment? Will you feel ill if you don’t, or be more prone to infection, or is it just the numbers will rise?

Did you have CDT first time round? I’ve a feeling you didn’t. You wonder if going backwards would work so that you could keep other things in reserve.

An Allo sounds drastic, but know what you mean about doing what’s necessary. Don’t know if I could, although it wouldn’t be an option for me. You, of course are younger. I have just reached 69. I feel grateful for that.

Hope you can bring retirement forward.

Lots of love.

Mavis xxx

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