Anyone Else Like Me? Straight in at Stage 3…

Hi Gill. Thanks for the enquiry.

Well, I'm still plodding along (albeit slowly); the rib/back/torso pain was eventually  brought under control - down to 'still present but tolerable'; ie. around to an almost- unexpected 10% of the original severity - and it's remained like that ever since. In April I tried to reduce my pain-killer meds (primarily zomorph) as I wasn't keen on becoming an addict), but had to revert to a higher dosage again as the severe pain returned. My wayward blood-counts have all returned to somewhere near normal, and my consultant is 'delighted'; the main issue I'm having right now though is bone-hardening, as I need a bit of dental work beforehand, and the local maxillofacial clinic has so far 'cancelled in error' two appointments - my current appointment is now 25/06! Still, as I remain 'fragile' and can't do anything physically-demanding in case I break/fracture any more bones, the good news is that I at last have an excuse to employ someone to do my gardening! Oh, and my three tumours have subsided without the need for radiotherapy - which I understand can make you feel significantly worse for several weeks before it has an effect. So, cytoma-wise, the tumour pain of a few months ago has been greatly reduced, but it's still there.

The latest issue I have is becoming nauseous every week for a couple of days around 48 hours after taking my pre-chemo dexamethasone, and of late this has progressed to the nausea 'lingering and continuous' so it's there day in day out, which is pretty unpleasant. I'm attending chemo every two weeks so someone can assault me with an over-sized needle (daratamumab), and I'm still taking 9/10 other meds every day (and self-injecting filgrastim weekly), and I'm pretty sure all this stuff being pumped into me is the primary cause of making me feel worse than I would otherwise - I just do what I'm told. 

Thankfully, I have family only a mile away, and I've been driven to every (apart from one) appointment I've needed so far. And - though this obviously depends on the individual - I've refused to become withdrawn, depressed, moody or any suchlike, as it wouldn't help me at all, and it would be dreadful to inflict that on  those I'm close to as well. I know that might sound easy to say, but none of us are going to last for ever, so I try to remain cheerful, making the best of what I have, remembering the good, and either ignoring - or even making light of - the inevitable bad.

By the way, if you're 'just starting out' (and like me maybe you aren't used to taking multiple meds a day - make sure you have some sort of spreadsheet or similar so you can tick-off each med as you take it each day; otherwise you'll end up scratching your head and wondering 'now, did I take that before or not?' and possibly end-up double-dosing. And I've been keeping an online diary, noting virtually everything I'm feeling, experiencing, need to do, have done, contacts, calls received and made - you name it, it's there (44 pages so far)!

Anyway, that's enough rambling for the moment. Take care and try not to panic or feel overwhelmed, and if you need any help or suggestions come back here and someone (or me if I'm around, though I don't come here all that regularly) should be able to give you a bit of advice.

Chris

Thankyou Chris, its good to know that things are improving for you albeit slowly . I have an added complication as I am also a breast cancer patient and am already taking many drugs for that, so not relishing the idea of numerous more meds and how its all going to affect my quality of life

I am stage 1 and getting a second opinion as I dont want to start drugs yet if I can be monitored but I do have a small compression fracture and hip pain so I may have no choice  

Keep smiling x take care x 

Hi Gill. Ah - that isn't great news. I don't know how the the breast cancer (BC) impacts the myeloma (or vice versa), but at least you're at (symptomatic) Stage 1, so hopefully the experts can get on top of that before it progresses to 2 or MM. As far as I understand (as brittle bones are one of the symptoms of Stage 1) that'll be by getting your paraproteins and blood-counts under control, which they've managed to do with me even though I'm at Stage 3 with multiple damaged bones. (With a bit of judicious med-management they even managed to shrink my tumours as well!)

Personally, until this all started I knew virtually nothing about cancer or its treatment, and even though you're already taking various meds for the BC, in your shoes I'd probably trust my consultant and take whatever meds he tells me to take. In my case his treatment, though unpleasant at times, has been excellent and so far it's achieved what it set out to do. My next challenge is for 'bone-hardening', which means I need to have several teeth extracted (all my own, but not good enough apparently!), and I'm not looking forward to that at all - it's on 10/06! 

If you can avoid progressing to Stage 2 (smouldering myeloma), I'd definitely recommend that, so please take note of what your consultant recommends, and I hope it all works out for you. Though I'm at Stage 3, my treatment has at least definitely prevented me from getting worse, so for me at least it was certainly the right thing to do, though I wouldn't dream of advising anyone else what to do in their own particular case. When my blood-counts were finally brought under control and back to normal (last month) my consultant was 'ecstatic' (his word), as it's rare for myeloma treatment to show such excellent results in so short a time (6 months). 

Take care - we'll get through this!

Chris 

Hi Chris, that's really good

.Yes I am stage 3 and had only one plasmocytoma . it is so scary at first what with all the meds to sort out and the chemo to deal with.i gave just finished 9 months of Bortezomid, Melphalan and prednisolone ( too old for stem cell!) and had all the nasty side effects one after the other.  They tried two different anti nausea meds till we got one that worked but still had the nasty taste in my mouth. I had neuropathy with sore twitchy legs for a bit too but we got that sorted with more pills.   Anyhow, yes., it was scary and unpleasant but worth while as I am now in remission and just taking paracetamol now and the monthly Zometa for bone strengthening olus calcium vitamin C and aciclovir.  It's a new " normal"  and the bone lesions will, I understand, always be there. I'm going to hydrotherapy classes and the doc also referred me to the gym. I did always try to walk with walking poles as much as I was able and accessed physio ( usually didn't feel.like doing. anything though).       Don't despair, light is at the end of the tunnel. You are not alone and you will get there trust your doctors and keep as interested and involved with outside tbi gs as you posdible can.  Well done you. It's not easy but it's do able .   Love Lindsay xxx

Hi I was diagnosed with myeloma over 3 years ago. I had 16 months of chemo. I also trusted God. I ve been in remission over 2 years and am no longer on Maintenance meds and refused the bone marrow transplant.  The side effects included tiredness and memory loss which I still have. But otherwise I feel fine. I'm 51. So there's every hope. Hang in there x

Hi , thanks for the reply.I am pleased you are doing well!

I am currently in hospital 4 days post stemcell.I was just looking at holidays (to keep me going),I just wondered if anyone has a vague idea about insurance costs for Turkey.Any advice wpuld be helpful ,I just need to know if its feasible or not.

Regards ,Mal

Hi Mal Betterdays I don’t have Myeloma but have had 2 Allo (donor) SCTs…..

It’s safe to say that on the whole the average post SCT recovery is see as being anything between 6 months to a year+

When it comes to Travel Insurance the first year post SCT is seen as high risk….. mainly due to infection risk wit’s the average hospital admissions being 2 times within that year.

As a Macmillan Volunteer I am not allowed to recommend any companies but do have a look through this Recommended Travel Insurance discussion thread (do go to the bottom of the thread and hit the >> to take you to the newest posts) in our Travel insurance group as it's where the majority of recommendations from other forum members are.

You can also look through all the individual members of posts in the group as well.

Comparison sites tend to use the same algorithms so getting a clear price can be difficult and it’s not that unusual to be turned down or told to call the insurers. 

It is actually more effective to call a few insurers directly as this means that you have answered all the questions correctly and in doing this a suitable policy can be offered and price given.

Full disclosure is always advisable as in the event of you developing any issues this can reduce the risk of an insurance companies wriggling out from paying out.

Based on my experience it took me to be 2 years post SCT to get a price that was not more expensive than the holiday cost

Hi I was diagnosed with high risk MM in September 2022.

a big shock no symptoms other than toothache. I had my first line of treatment start October 2022 finish January 2023. The treatment was not as effective as myTeam expected my lightchains were 14,500 when I was diagnosed & after first line of treatment went down to 9500. Referred to Royal Marsden 2nd line of treatment was 2 rounds of 5 aggressive chemos my lightchains went down to 146 I then had my 1st Stem cell transplant was a success but lightchain counts at 46 had my 2nd  Stem Cell transplant & I have been in total remission since September 2023. It was very hard but I am doing well , I take Lenodanide a maintence drug daily to keep the cancer away for longer. I do have side effects which are managed with medication & I am checked every 4 weeks.

I am living my life doing what I want to do as best I can for as long as I can.

i thought my life was over when first diagnosed my whole world seemed to fall apart but with the support of family friends, Maggie’s Centre & my Team at the Marsden I am doing well the whole diagnosis, treatment & emotional stress has made me stronger. I wish you well it does change you as a person stay strong & accept all support with open arms.

jacquie xx

Helloooooo we seem to be mirroring each other in the time it got to be diagnosed. Yep, my MM is as bad as they grade it.  I complained for months about increasing pain, weightloss etc. Though in December 23 they found multiple lesions, fractures and a full out break. I started on a trial very soon after.  I've been doing fantastic in tolerating all the chemo and have just had my stem cells harvested and am waiting for their return trip.

I am still in a lot of pain, can't stand for long, but one of the things that has driven me up the wall is that I have had to be shielding for the past six months. Not gone anywhere except the dentist, doctor and hospital. That and I am stuck in a house that I am having trouble managing because of the pain and fatigue.  I too tried reducing my pain relief, which was daft, but I think I have it just about right where it doesn't block me up and I can take the edge off.

BUT...I responded fantastically to treatment and I hope the same will happen with the SCT.   It is hard to keep focusing on the positives, but I am trying and am thankful that I am getting this treatment  I'm looking forward to getting back to some kind of normality.   Reading other peoples stories, it can get better, it just seems to take forever to get to that point!

Hello again folks. Thanks for all the messages, and sorry I haven’t responded recently.

Well, over the past month or so my broken, fractured and eroded rib pain levels have remained at a relatively ‘low’ level (still present and very slightly more intense of late, but still nowhere near as severe as 3+ months ago), and last week I had a follow-up MRI to see how things have progressed or deteriorated internally since my first MRI in December 2023. Until recently I never had any adverse chemo-medication after-effects, but recently I seem to be getting regular spells of nausea, which last from a couple of days to a week in length. It seems to come-on about 48 hours after taking my weekly pre-chemo dexamethasone, though my original 20 x 2mg dosage was halved to 10 tablets a while ago; this has recently been reduced again to 5 x 2mg, so I’m just hoping it may do some good eventually. To be honest, I think I’d rather have the pain than the nausea – it’s a very discomforting and unpleasant sensation.

Two weeks ago I had to have 6 teeth extracted (in one sitting), which I wasn’t looking forward to at all as I haven’t had any toothache or dental issues for many years, but – apparently - it had to be done to enable the bone-hardening treatment to go ahead. I’m still in remission as far as I know, and self-injecting filgrastim every week, and continuing with the same meds I’ve been on since this whole palaver began. ‘Sleep’ – if it can be called that – remains at 3 to 4 hours per night, so I’m now in the habit of making a cuppa about 6-ish each morning and reading in bed for an hour before getting up proper and beginning my daily routine.

All in all, I suppose everything’s going as well as can be expected; I take what I’m told to take and trust in the experts; and my consultant, his team, and the chemo-folks are great. And by staying as positive and as cheerful as I can, I’m sure we’ll all get through this together.

Take care folks.

Chris