[blackburnmarkParticipant]

Just started cycle three. (Referral for stem cell is in) // (Dexamethasone Daratumumab Bortezomib)

I was very weak when I was diagnosed plus hip and lower spine pain/ various minor bone pain (Just though I was getting old very fast) 54 years old, reasonably “out doors” type (Paragliding / Paramotoring camping etc) this had declined over the space of two years (Pre diagnosis) to the point of insisting landing my Paramotor within ten meters of my van to avoid the grueling slog it had become to move my gear any further than that.

Chemo seems to be cumulatively sapping more and more of what little strength/stamina I had as the weeks go by. Anything under 50m I use a walking stick, anything over that I’m using a wheelchair as a stroller until the pain and fatigue get too much then I will wheel myself in the wheelchair for a short spell until I recover (five mins or less) Struggling with stairs.

I am beginning to watch some of the valuable things in my life slipping away over the horizon which is quite disturbing, I was hoping the decent would plateau but no such luck so far.

I am hoping to gain a perspective from someone who has had a similar start with Myeloma and has managed to get their ducks back in a row.
I am cool with the slog but it would be a lot easier if could see a chance of at least getting back to where I was before the Chemo started (Tinkering in my workshop and landing my aircraft tactically close to my van)

Any first/second hand experience in regaining a foothold into the fun that life can be from such a start would be very much appreciated.

Mark

[shaun3Participant]

Hey Mark,

sorry to read your diagnosis. I was a very active and happy 53 year old when I was diagnosed. Two stem cells transplants and 4 years later, I’m in complete remission and once again very active and happy.

More than happy to talk by email or text if helpful;

You’ll get through it just like the rest of us.

Stay strong mate

Shaun

• This reply was modified 1 year, 8 months ago by  courtneymyelomauk. Reason: Personal details on forum

[blackburnmarkParticipant]

Will drop you an email now Shaun.
Cheers

[bearParticipant]

Sheila was diagnosed 8.5 years ago, having had the GP tell her her back pains were due to bad posture, she endured 11 fractured ribs and a collapsed vertebrae for three months. She ended up bed ridden with shingles, the GP home visit again resulted in no help.
Having had VTD and a kyphoplasty, she went back to running 3 miles a day in the Snowdonia hills, and does so still, age 63.

[blackburnmarkParticipant]

Nice one Bear.
That sounds like one hell of a climb out of deep trouble for Sheila!
Much heavier than my beginning.
That is great news and inspires some optimism that I may yet see some worthwhile mobility and playtime.
(Love Snowdonia, have done quite a bit of flying those hills in my time)

Well done Sheila!
XXXXXXX

[mulberryParticipant]

Hi Mark
For many of us life does get pretty much back to normal once the myeloma is inactive, which for many of us is after SCT.
The person who leads our local support group was in a wheelchair for her first six months after diagnosis, but for the past 18 years has been able to dig her allotment, lead walking groups, have active holidays.
This disease isn’t a one way street, it ebbs and flows. At the moment you are taking a combination of serious drugs, and have a regime that is dominated by hospital visits. Even without the myeloma the drugs would take a toll on what you can do …. But things do get better, often much better, beyond expectations.

[blackburnmarkParticipant]

Cheers Mulberry, that’s another great bit of encouragement!
Me and the Mrs have been trying to keep our expectations reasonable to avoid another devastating blow but this does allow room for me to fixate on the wheelchair and crawling up stairs thinking I am in unusually poor condition.
We had settled on the mean of five years with two or three good playtime years where we can continue to get a bit older and fatter together and continue to make fun of our demise which we are quite good at.
I was losing my grip that on particular hope and perspective.

These stories are a great help to remined me that there is also the risk of us doing quite a bit better than that 🙂

These two folks climbing out of worse is helping keep that door open for me.
Cheers for that guys.

Love Love Love
XXXXXXXXX

Mark

[davidainsdaleParticipant]

Hello Mark

I would like to add my own words of encouragement to those you’ve already had.

I was diagnosed in 2013 aged 59 and also pretty much wheelchair-bound for 12 months.

First round of treatment was very successful and I started second line DVd in 2019.

If you look on this Forum in the treatment section you’ll find some of my earlier posts.

I have to say that it was a slog but well worth it. Now on Cycle 30 of monthly Darzalax maintenance, bloods and pps all normal,and able to enjoy my retirement. I am also the support group leader for one of the groups in the North West.

Hope this helps.
David

[blackburnmarkParticipant]

Splendid!
Great stuff David.
Another one to add to my collection of [“Maybe” the Mrs and I will have to put up with taking the mick out each other for “years” yet] 🙂

Humor has seen us both through thick and thin over the years but being afraid/uncertain was draining the humor out of me (very intimidating)
I am back to feeling okay with things and these stories have helped restore the reasonable possibilities of a very worthwhile outcome.

Take it easy guys
Onwards and upwards 🙂
XXXX

[susantrParticipant]

Hi Mark
I was diagnosed February 2016 aged 51 after been ill on and off with back pain for 2 years or so. At diagnosis I was unable to walk, had stage 2 acute kidney injury, collapsed L5 with L3/4 collapsing and rib fractures. I felt bad then, but felt much worse once on therapy CTD. After 4 cycles I had SCT that was July 2016 and that was my last treatment to date (touch wood). I have resumed a normal life. Good luck in your journey.

Sue

[blackburnmarkParticipant]

Nice one Sue.
That’s great news.
Plenty of people seem to be digging their way out from similar or worse than I am dealing with so I am nicely back to focusing on the mean of five years with a couple of good mobile years in the middle as a realistic hope 🙂

Sundays are usually pretty bad for me but I’m not quite the zombie I usually am today so maybe I have hit the worst until I get SCT 🙂

[rebeccaRParticipant]

Hi Mark, I was diagnosed nearly 10 yrs ago at 50 yrs – the myeloma type that impacts kidneys rather than bones – diagnosed about 48hrs from death – re renal failure. I have high risk genetics and prognosis seemed bleak.I am currently 8yr 8 months from SCT and it took a year of treatment to get me to SCT shape. I was told it may give me 18 months remission or, if lucky, might get 5 years. Yesterday I played a tennis match for 3 hours in the heat! That’s how normal my life is now. Always remember MM is so very individual that you cannot accurately predict your “time” from stats. When I had my SCT consult they said some people they thought would do well didn’t and others they thought would do badly didn’t – he was very honest and said he felt like a “bookie”. I was in a dire position and trawled the internet etc to find the positive stories of 20 yr remissions etc and there are absolutely plenty. Another year you will look back amazed at how life has resumed once again.
Rebecca

[blackburnmarkParticipant]

I hope you are right Rebecca, my kidneys are at 30%.
I daren’t dream of ten years, it looks possible but with the mean being 5 years I can see the “bookie” perspective and don’t want to get too carried away.
I would consider myself very lucky to get my mobility back for a few years, that would be bliss and it seems quite possible.
Fingers crossed 🙂

[courtneymyelomaukModerator]

Hello Shaun3, just a note to say I have edited your post to remove personal details in case you receive any spam.
Thank you
Courtney

[rebeccaRParticipant]

Hi Mark – at diagnosis my kidneys were about 6% and I was being sent for dialysis until they discovered MM. I only had Dex and velcade (kidney friendly). As the Mm burden came down my kidneys improved and were in low 20s when I had my SCT – accepted by Leeds because of poor cytogenics – but could have wiped my kidneys out – but didn’t. I worried more about dying from kidney failure than Mm as then 51 and in low 20s. Was constantly told they could not improve – as kidneys cannot regenerate. I sought out success stories and was told by fellow mmers that they did get little gains after 2-3 years. It took about 5 years to get me to a stable 40% – perhaps that’s how long it took to get rid of the after effects of chemo/SCT? I don’t know but know of others who very slowly improved function. Once off the chemo your kidneys will improve. I did research kidneys and eat more kidney friendly but nothing excessive. I resent now how I was consistently told they would not improve…. we all need “rebellious hope” and follow the path of positive actions – my outlook was always a glass half full and I believe ultimately it makes a difference.

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