[taffdParticipant]

Hi rabbit,

I had to stop lenalidomide after a couple of days of starting, as I started to get symptoms of peripheral neuropathy.

I may well have been emotional as well, as when I phoned my team to report it I was somewhat, as I later described it, dramatic.

[taffdParticipant]

Soon after diagnosis in 2016, I decided not to have an SCT, as I thought it’d kill me, as I wasn’t well enough.

Turned out I was correct as I developed an ischemious bowel due to radiotherapy and had to have my sigmoid colon removed.

Had I had an SCT, I’d not have survived.

[taffdParticipant]

Hi Fred,
You’re the second person I’ve heard of this week, who’s passed the 18 year mark.

Congrats and Keep Going.

Best Regards
Taff

• This reply was modified 1 year ago by  taffd.

[taffdParticipant]

Hi,
This is peripheral neuropathy, I too have it permanently in my feet and lower legs. I take an extra slug of morphine when it gets bad enough to affect my sleep.

Doesn’t get rid of it entirely but helps enough to make a difference and allows sleep.

Best Regards
Taff

[taffdParticipant]

Morphine works for me.

[taffdParticipant]

Hi Folks,

A subject I deal with on a daily basis. Due to sepsis and removal of my sigmoid colon, followed by a sticture of my bowel, I have a colostomy and need to control the consistency of my output.

I use the osmotic laxative ‘Laxido’. As it’s osmotic, all it does is increase the water content of the bowel and is thus suitable for long term use.

It also works though, in large doses, for severe constipation or faecal compaction.

Hope this helps
Taff

[taffdParticipant]

I’ve had my haematologist consult and it’s been confirmed – symptomatic oligosecretory relapse.

A bone marrow biopsy showed about 5% plasma cells, which is in the normal range and blood results were normal. Paraprotein detectable but not measurable and a free light chain ratio of 1.4, again normal.

I start VCD tomorrow, 6 to 9 5-week cycles.

I wish you All the best
Taff

[taffdParticipant]

Since chemo finished in Feb 2017, I’ve had a cognitive impairment. As well as the symptoms you describe, I have no internal dialogue. I cannot think, plan or ponder. With my long and short memory being virtually gone, I literally live in the moment.

I have to say I see this as a plus, as I’m incapable of worrying about having MM, or indeed, anything else.

It also means that my quality of life, which might be intolerable for some, is fine for me. I get all the quality from a grandchild’s smile.

[taffdParticipant]

Hi again Rosie,

I’ve been in remission now since Feb 2017, which is I think 17 months. getting past 1 year apparently, is goodly for the future.

I’m not on any maintenance for the myeloma but I take –

MST Continus (slow release morphine)
Oramorph for breakthrough pain, occasionally
Duloxetine, an anti-depressant
Omeprazole for GERD (gastroeasophageal reflux disease)
And a rescue pack of prophylactic antibiotics and steroids for COPD, taken when I think I’m getting a chest infection

I’ve also been anaemic since my initial surgery in June 2017, and it’s as yet, been undiagnosable (my Hgb level hovers around 85/90 g/L).

Also had a prophylactic nail put in my left femur. Surprisingly I was out of hospital the next day, able to weight bear a little. Remarkable.

All in all, I appear to have responded to initial therapy very well but I’ve no idea how common this is.

Hope that helps

Taff.

[taffdParticipant]

Hi Rosie,
I was diagnosed in October 2016, though I’d had bone symptoms for over a year. I also have COPD and a number of various, not so serious other conditions.

I became very ill very quicklyand was started on Cyclophosphomide, Thalidomide and Dexamethazone. Six 3 week cycles. I achieved complete remission in Feb 2017 and I then had 10 sessions of radiotherapy to a large plasmacytoma in my left iliac bone.

I had copious quantities of morphine in the early days and still take the slow release stuff with occasional oramorph for breakthrough pain.

I found the effects of chemo to be cumulative and by the 4th cycle it seemed to be a great effort to take it. Now it seems a great effort simply to be. To be alive and or awake. That sounds dramatic but it’s just a feeling that describes my level of fatigue, which is ongoing.

I have peripheral neuropathy and cognitive impairment, such that I don’t actually care about having cancer. I literally live in the moment, as both long and short term memory are very bad.

The only other side effect of chemo that I can remember is having swollen legs and feet and I feel that I still have some swelling just above my knees.

Nausea was well controlled by metoclopromide and indeed I never vomited until the other day after taking antibiotics on an empty stomach.

Unrelated, as far as I know, in June 17 I managed to get ischaemic colitis and thus sepsis and had to have my sigmoid colon removed. I’m left with a colostomy and a mucous fistula, needing to wear 2 bags. I don’t care about that either.

I’ve told you all that, not to alarm you but to explain why, early on, I made it clear to my consultant that I didn’t fancy having a stem cell transplant, as I didn’t think I’d handle it well. I also wondered if it was worth it to get an average 18 months extra, when it might take a year or more to recover from it. A transplant was never mentioned again.

In general, my advice is always ‘be sufficient to the moment’. That’s all you need to think about. Given any opportunity, live. And laugh as much as you can. And wear sunscreen, obviously.

I’d also advise anybody with cancer, or their carers, to consider anti-depressants. I’ve been on duloxetine for years and am incapable of holding a negative thought for more than a few seconds. For me, it’s a magic drug.

I wish you and your MiL all the best.

Bestt regards
Taff

[taffdParticipant]

Hi crawf,

I’ve been on monthly pamidronate rather than zometa, finished chemo Feb 2016. I’ve never thought I had any effects from it.

While on chemo, CTD, I used to have moments of weepiness that lasted seconds, for no apparent reason, so I assumed they were med-related.

I’ve had these occasional moments from time to time since stopping chemo though, so they’re probably a lasting side-effect. I was prompted to answer your post as I’ve just had one – eyes teared up, could have cried, but no reason for it. Gone now.

I’m lucky, depending on one’s perspective, that I’m obliged to live in the moment, due to loss of memory, long and short term, long term anti-depressants and mild cognitive impairment. It’s very freeing, although I suppose there’s a downside in the inability to think, plan, concentrate and lack of awareness. These negative affects don’t feel negative though.

It’s difficult to explain – it sounds like I’ve got some sort of dementia when I say it, yet I’m articulate apart from forgetting words now and then. What happens is, my responses are reactive, as I’ve no capacity for abstract thought. You’ll note that I’ve slightly gone of the focus of your post because what I’ve written is just what’s come into my head, prompted first by your post and then by what I’m writing, as I write. Before I wrote all this, I had no idea of what I’d actually write and, although it seems that I’ve changed the focus to me, it’s actually meant to show people effects that can occur. I think.

 

Best Regards

Roy

[taffdParticipant]

Hi auldolf and welcome,

It is indeed a bit of a shock and we can indeed go from apparently healthy to falling apart very quickly.

I suggest that your doc is definitely giving you the gospel; when I was first diagnosed, the weight of my leg with my foot off the ground, was sufficient to cause a fracture to my hip bone, luckily not a weight-bearing part. I had a large plasmacytoma in the bone and had a fist-sized hole in it as well. Your bones are definitely very fragile. You don’t want to be lifting a kettle full of boiling water only to have your wrist/arm break and the possible consequences.

Simply bending over was enough to cause a vertebral fracture for me, though the opportunity to image and diagnose my myeloma was missed at the time.

Suffice to say though, you really are fragile at the moment. I gave up driving immediately, as I didn’t want to be a danger to other road users. Imagine sneezing or coughing while driving; that in my case was enough to cause fractures. A jerk on the steering wheel while passing a bus stop full of kids? The possible consequences don’t bear thinking about.

You have to expect the possibility that you can become very sick very quickly, unable to do anything for yourself. But also realise that this won’t necessarily be a permanent state of affairs.

You’ll get to hear that different people are affected differently and this is true. Nobody really knows how myeloma is going to affect you personally. Some go on to have virtually ‘normal’ lives and some are severely affected on a permanent basis.

I wish you all the best as you proceed along your journey

 

Best Regards

Taff

 

[taffdParticipant]

Hi Lisa,

I had a prophylactic nail put in my left femur, as it was about to break. At this time, the weight of my leg was enough to fracture my pelvis, such was the state of it due to a large plasmacytoma.

The morning after my op, I was asked to get out of bed and to see if I could weight bear. I was absolutely stunned to find that not only could I weight bear, but could also walk a few steps with the aid of my wheelie walker thingy. I went home the same day.

For me, it didn’t hamper me in any way, though I have to say that my chemo was all oral tablet form (CTD). Hope this helps.

 

Best Regards

Taff

[taffdParticipant]

Hi again Karl,

‘Fraid I’m not going to be of much help as my plasmacytoma was in my pelvis. About 3 months after mine finished I got colitis which turned to sepsis. Emergency life-saving op to remove sigmoid colon and now I have 2 bags.

So RT side effects can be mild or severe and can occur years afterwards.

 

Best o’ luck

Taff

• This reply was modified 6 years, 9 months ago by  taffd.

[taffdParticipant]

Where’s your plasmacytoma?

[Author]

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