[ebridges93Participant]

Hi All

I was diagnosed in May 2017. I had a very bad pelvis and hip fracture which meant I spent until September in hospital. Basically myloma stole my 2017! But Im not going to get bitter! It was a shock to be diagnosed and to find I had it in both hips, femur, ribs and spine. And to nearly not walk again as a result of a very bad fracture! But I have now had an operation been under two really good hospitals in Birmingham and have been responding well to treatment I have had 4 cycles now of VDT and got appointment next week to see if I’m having a 5th cycle.

I am 38 and have asked about freezing my eggs because of being child bearing age but because I have been on thalamidamide this may not be possible and could delay transplant treatment. So theres lot to consider.  Has anyone else experienced this?

Throughout this whole bizarre journey  I have tried to remain as positive as i can do. I have been lucky to have good family and friend support. But its been a tough journey.

At the moment I am due to have a stem cell transplant beginning of 2018. I wondered if people who have had this could tell me a few things that helped them get through this? How to stay positive? How they coped? Does it hurt? Do you really smell of sweet corn during treatment? How do cope with changes to taste? I already know I will lose my hair and started to lose it durung cycle 3 which did confuse my consultant. And I am prepared for this.

I would really like to hear peoples experiences of this.

I went to an info day back in September and one fellow fighter told me no matter what you do no matter how you feel during your hospital stay get up get dressed every morning little things like that really make a difference! Don’t let it beat you!! Someone else told me to have someone with me at night as they had night terrors.

The more I hear about the stem cell transplant the more Im bit worried. But I know this is best treatment plan for me! I still have lots I want to do so need to embrace my new normal. If a stem cell is what it takes then so be it!

Just want some positive coping strategies or don’ts from people who understand.

Sending good thoughts to everyone.

Thank you

EmmaJ

 

 

 

 

 

[taffdParticipant]

I chose not to have an SCT after induction with CTD as I didn’t think I’d cope with it. Lucky. Had I had one, I’d not have survived a subsequent bout of sepsis.

I wish you well for yours.

 

Best Regards

Taff

[rebeccaRParticipant]

Hi Emma, So sorry to hear you are going through this at such s young age. I suspect because of your age you will sail through the transplant- it sounds really scary but it is just abit more than the treatments you have had and sounds scarier Han it actually is. All being well you’ll be home in around 16 days – I had a count down calendar from 16 and was hugely motivated to cross it off st the dnd of the day and see another day over with. No matter how rubbishy I felt I could see I had got through another day and one more day closer to home. Nothing much happens the first 3 days until it starts to take effect so enjoy that time. Spend the time planning treats/events when you are well – spend the time looking forward. 3 months later you’ll be back to full fitness but don’t rush back to work – I chose to have 6 months off and used my sick leave as a holiday treating myself/getting fit and recognising I had been through something massive and deserved some “me” time. Use your solitary time in hospital to analyse your life and define your priorities/desires and plan how to change your life to maximise fulfilment. I was 51 at Sct – a year after diagnosis – this Xmas exactly I will be 4 years post transplant and still drug free. This year I went on an intense tennis holiday and a learn to paraglide holiday! Life is good – I choose to work part time and focus on things I want to do. My husband is currently having 6 mo thx off work to indulge his passions – we have now cancelled Sky and all things superfluous, I now drive a 10 year old car but we feel, at the moment, we are living the dream! “When one door closes we often spend our time looking at the closed door without seeing a new door that has opened – which may be better”. Use your time to plan/embrace change – you are in this for the long haul so see it all as a start of a new beginning and a catalyst of change – if you want to. That’s what got me through it – looking forward – onwards and upwards.
Good luck
Rebecca

[rebeccaRParticipant]

Hi Emma – I am conscious now that I haven’t offered any practical advice on how to get through it easily – perhaps because I see MM more of a mental battle than a physical one. When you don’t feel like eating much – but know you need to keep your strength up – take in some little jelly, custard and rice pudding pots. They slither down and also in case you get a sore mouth ( I didn’t). Lots of underwear to be discarded during the S&D stage in case of mishaps (I got cheap packs from Primark just in case). Baby wipes a must. A snuggly warm throw – often the rooms are extremely cold but germ free! It is hard to concentrate on books so magazines or dvd sets. You will feel quite listless a lot of time and just want to rest/sleep a bit like having flu really. It is all doable and often not half as difficult as you imagined it to be. As with MM it is all very individual – have never heard of it causing night terrors and you will generally sleep like a baby. Just keep looking forward x

[tonyfParticipant]

Emma, its not fair that someone so young should have to cope with MM. But age is on your side! You’ve read from Rebecca of her experiences.

I am a lot, lot older than you. In fact I had a second SCT at 72! 18 months down the line I am drug and treatment free, we travel, quite a bit, go to concerts, off to see Queen in London in December, and we live life to the full.

Sure the SCT can be rough going, at times, its not painful, its very doable.

Go for it, plenty of support here if you need it, wishing you the best.

regards

Tony F

[rebeccaRParticipant]

Tony – You are an inspiration – carry on carrying on!
Rebecca

[tonyfParticipant]

Hi Rebecca, hope I can keep carrying on for a long time to come!

I find some of the posts both on here and on the Facebook Support page very sad. MM should not have entered EmmaJ’s life at 38 years age, thats not right. The same with many others who post on both sites, they are going through some tough old times.

I know its very scary but there are so many treatments now available and more on the way, there will be a cure one day.

EmmaJ, SCT would seem to be the most positive of treatments available at the moment. To answer your questions, no it doesn’t hurt at all, yes there is a smell of sweetcorn around, but I doubt if you will smell it, yes your hair will go, mine grew back very curly! The taste buds take a while to return and you probably will find eating tough going for a while. There will be times when you won’t want anyone around, but it is all doable.

You sound like a strong, positive person, who is thinking this thing through.

Keep staying positive.

Regards

Tony F

[sabsParticipant]

Hi Emma,

As you can see you are not alone. My other half was diagnosed in March this year and he is 39, but we knew something was very wrong with him before his 39th birthday when he was the same age as you, unfortunately he was ignored for several months by his GP, you are both in an elite club of being under 40. (he has his 40th bday this month and we are lucky that its his week off from chemo treatment if not he’d be hooked up).   I was a little surprised to see you were not offered any kind of trial based on your age, right now my other half has been randomized and instead of having  SCT he is now on another 4 cycles or Carfilzomib.

Anyways after several months I have started to feel more upbeat about the future and see a future, while we were attending Stanmore the RNOH for his collapsed vertebrae the Dr there was very upbeat about the way in which trials and medication were coming along for MM, he also likened the disease to HIV which was exactly how I have been viewing the disease and hoping the progress would match. While there may not be a cure (or else we could eradicate cancer for good) the disease is becoming more manageable and as with HIV 20 years ago it was a death sentence now the national average age for those with HIV is in line with the UK’s national average age.  The progression that MM treatment has made in the last 10 years has come a long in leaps and bounds and there are many many treatments to be had so if one doesn’t work another one will. I like to think that in a handful of years from now a new suppressible long term drug will come out and people now days can live long happy healthy lives with a disease. But that is my thoughts and wish for now, you are young and apart from the obvious I gather healthy you will get through the worst of this and be back on your feet ready to manage whatever the MM has to throw at you.  Last week a work colleague had to fly home her mother was diagnosed with a brain cancer – and unlike the MM she has been given less than a year if she is lucky and only at the age of 52, remember there are some cancers that wont give you a fighting chance.

I hope all goes well with your SCT I guess it wont be for another few years until my other half has one (trial wont finish for another 22 months) but his harvest of cells is on ice now.

[deniseb451Participant]

Hi Emma, I’m 55 and was diagnosed in May. I had my chemo on 16 Oct, stem cell on 17 Oct and I came home 15 days later (last Friday).

My harvest went well and I got it all done in 4 hours, it doesn’t hurt, I just felt a bit sick during it but the nurses sorted me out as soon as I told them. I have to admit That when I started to feel off I decided I could handle it but it got worse until they gave me the antiemetic and it cleared up miraculously. So, first thing is don’t hide it if you start to feel different, tell them and they will help.

When as I  was told about the chemo, I had my hair cut short to get everyone used to me without long hair. The day before the chemo I had a buzz cut (number one all over), because I couldn’t bear the thought of seeing clumps all over my pillow. I felt it gave me some control. My hair fell out at day 10,  and although still not nice, nowhere near as traumatic as it might have been (my husband thinks I look like a rock chick,lol).

My hospital didn’t have a policy of chewing ice during the chemo but I made a special request. I didn’t get the dreaded mucositus for which I was incredibly grateful. There may or may not be a connection, but I decided it was worth a go. So, always ask would be my advice. It is you, not them who’s going through this and anything that makes you feel better then insist.

To get through the hospital stay, I took lots of books, audio books, my iPad, papers and magazines and I taught myself to knit and crochet. These were really important because you are a long time alone in your room. I struggled to take all the tablets (gagging reflex I’ve always had), so I asked to have them with my breakfast. It took a few days but the nursing teams soon learnt what I needed. Again, you need to tell them, possibly more than once, and get your care geared to you, rather than standard. You are not being demanding, you are trying to get better as soon as you are able.

I got showered and dressed every day, and tried to sit in my chair rather than on/in my bed. This made me feel more normal. Psychologically it made me feel more positive.

At no point did the chemo or transplant give me pain but everyone’s journey is different. Be fully aware of what might happen, but don’t dwell on it and deal with what happens to YOU. No two are the same, and nothing is inevitable. I’m not trying to say it’s all easy btw (S&D sap your spirit), but it is very manageable. And once you’re in it, it so much better than living with the dread, because you can look forward to better times.

I’ve now been home 4 days and being wrapped up in cotton wool to try to avoid the dreaded infections! I made the mistake of doing no exercise for a long time before and after diagnosis but now, for some reason I’m keen to get fit. Maybe because I have cancer but it’s not terminal I want to enjoy the rest of my life to the full? Who knows, and I haven’t done any exercise yet, but I might pull on a woolly cap later today and go for a 10 minute walk round the block. Got to start somewhere!

Take care, and don’t fear this. It is there to make your life better so embrace that fact, rather than the dread.

• This reply was modified 7 years ago by  deniseb451.

[AvrilParticipant]

I am also due to have a second SCT in Jan 2018. I would advise taking with you, based on my previous stay in hospital, ear plugs, eye masks, relaxation tapes or audio book CDs etc. With my previous SCT I was in hospital for 3 weeks, but my hospital has moved to ambulatory care now as they say there is less chance of infection. Not sure about this as it means going to the hospital every day for blood/infection checks, so surely still at risk and I gather 60% of patients end up in hospital anyway!

Anyway, good luck with your SCT. I also had a damaged hip and pelvis after a large plasmacytoma and could hardly walk, but although a lot older than you the large hole in my pelvis reformed itself and I now walk with barely a limp. I hope this helps you have a positive attitude towards the SCT and to remember that everybody’s experience is different, some people just sail through it and others find it more difficult, but the end result is worth it.

[liamParticipant]

Hi Emma,

i was diagnosed in July 2017 aged 39, I presented in a&e with kidney failure and spent a week in ICU where they diagnosed my MM. I went through 4 cycles of RVD and am now just home from my stem cell transplant.  I was very apprehensive having read a lot about the procedure and having young children I was worried that I would have to spend Christmas in hospital.

Thnakfully the transplant went much smoother than I had anticipated and I got discharged to go home at day +14, I’m now at day +23 I’m back eating normally with no taste issues or nausea. Although i’m Home i’m still avoiding mixing with people as I really don’t want to pick up an infection that would re-admit me but I do get out in the fresh air for a walk everyday.

i has no issues with mucositis, and I used ice pops and ice cubes during the melphalan infusion and for about two hours after. I made a point everyday in hospital to get up shower and dress not sure exactly what it done but at least it made it feel a bit more normal. I did have pretty bad diahorrea and stomach cramps for a couple of days and I pretty much ate nothing for 3-4 days to not put my stomach under any pressure.

i hope this helps and if you have any questions about my experience let me know.

[carolerParticipant]

I too am waiting for admission for a transplant, literally waiting for the call!

I have been very apprehensive about the whole thing, as someone said you know its the best thing for you but very anxious about the risks etc. The previous posts have been very helpful. I know that everyone is individual and that we all react differently but reading about personal experiences really helps calm the nerves.

I was diagnosed with MM in June 2017 and have spent the time since trying to be as positive as possible not just for me but for my family as well.

I am quite interested in the chewing ice/ice pops as this is not something I have heard about. Is it supposed to help with the mucositis?

I have only just joined the forum but will certainly be a regular visitor from now on.

[rebeccaRParticipant]

Hi Carole, Good luck with the transplant – you may have got the call by now which will negate this response but….I believe many people suck on ice for 3-3 hours or as long as they can stand thus protecting the mouth area and hopefully prevent mucositis. Those who do this and fon’t Get it assume it is the ice effect. I did not suck any ice and didn’t get mucositis so I think it’s an individual thing – you’ll get it or you won’t regardless. I was also wary that I did not want the chemo to be less efficient anywhere in my body. I did try sucking on ice before I went in but did not have the willpower to continue longer than a minute and luckily I had no problems. I have read a report that indicates whether you get neuropathy or not, with velcade, is in your genetic profile which explains why some can’t tolerate velcade and others are fine. In the future hopefully they can use this discovery to eliminate neuropathy but it does highlight – along with MM – how individual we are

Rebecca

[AvrilParticipant]

Hi I have just come home from my second transplant. The ice is essential if you want to keep the terrible mouth sores at bay.
I had dreadful mucositis with my first SCT and it really hindered my recovery. You suck lollies, crushed ice or ice pops half an hour before you have the Melphalan and for 2 hours afterwards. Perfectly doable and I have not even one mouth ulcer or a sore mouth, which want I could continue to eat and drink all the through, which has made the process a whole lot easier this time round.

You don’t really feel ill just out of it a bit and weak, so try not to worry too much, I did too and its turned out okay. I am 70 now my first transplant was 10 years ago, so it’s worth it, even if you just get 4 or 5 years remission without having to take any drugs and life can go back to normal.

God luck I hope you don’t find the process too difficult.

—–Original Message—–
From: WebTeam [mailto:webteam@myeloma.org.uk]
Sent: 26 February 2018 13:48
To: noreply@myeloma.org.uk
Subject: [Myeloma UK] Due to have stem cell transplant Jan 2018 any advice about getting through it

NO-REPLY: Please do not reply to this email directly, use the post link below.

caroler wrote:
ice/ice pops as this is not something I have heard about. Is it supposed to help with the mucositis?

[willjames2Participant]

Hi Emma,

I was 41 when diagnosed with lambda light chain myeloma and after 4 x cycles of CTD, I had an Auto SCT followed by a RIC Allo SCT (donor transplant).

Should you wish to discuss anything about your treatment, I’d be happy to tell you my experiences.

You can email me directly on scott.mckenzie2@btinternet.com and I’d be happy to chat on the phone if it helps.

Onwards and upwards!

Kind Regards

Scott

[Author]

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