I was diagnosed with myeloma in October 2016 and spent 5 months on chemo (tablet form) followed by 10 sessions of radiotherapy to a plasmacytoma in my pelvis. I achieved a complete response, putting me in remission but got radiation colitis a couple of months ago and had to have my sigmoid colon removed and now have to wear two bags. I also had a prophelactic nail put in my left femur, as it was about to break. At present I have difficulty eating due to changed taste and low appetite but am just managing to maintain my weight. My mobility is severely impaired and I'm still fatigued, though not as much as I once was. I'm very weak, having lost all muscle and need help with everything.

That's me.

Myeloma is different for everybody. Few people experience exactly the same side effects of treatment, it's an individual response. People are diagnosed at different stages and have different responses. Staging is not the same as with other cancers, mostly being a measure of organs affected.

There are people doing bike rides of hundreds of kilometres less than a hundred days after stem cell transplant. Others last weeks after diagnosis. Only the medical team will be able to give guestimates of possible outcomes depending on responses to treatment.

One of the best sites to peruse is myeloma.org.uk

Another is the US site myelomabeacon.

Things to be very aware of are the risk of infections, which can be fatal and the risk of fractures, as often many bones can be affected. Bone pain can be significant, I'm still on morphine, oral hygeine is important and a lot of people get peripheral neuropathy, which I've also got. Various other side effects are common but medication is usually prescribed to counter these at the same time as chemo.

That's about it for the first reply but if you want any help I'll provide it where I can.

Regards

Taff 

Hi Taff

Thank you so much for sharing your experience with me during what must be a very difficult time for you.

The websites have been really useful too.

Dad had his first chemo session on Monday and has got lots of different tablets to take every day.  I believe he has got 4 sessions.  He seemed very confused when I spoke to him earlier and mom say he has been doing some strange things today,so I dont know whether this could be a side effect of the treatment so far.  Tomorrow he has his 1st vitamin B injection - he has to have a course of 6.  With my dad, its his kidneys that are affected and he does get some pain in that area. I had never heard of Myeloma until dad was diagnosed and I wanted to find out as much as I could which is why I joined this group.

All I can do is stay positive and support him and mom as much as I can and hope that there is light at the end of what feels like a very dark tunnel at the moment.

I am really grateful to you for taking time to give me a better understanding of this horrible disease and sharing what you are going through.  

I wish you all the best

Hi again Moneypenny,

I've been lucky kidney-wise, so unfortunately, I can't help you there. I'm assuming that since your Dad is on tablet chemo, he's on CTD; if so, same same with me. I was on a 21 day cycle and continued for 6 cycles.

Side effects - Fatigue. The effects of chemo are cumulative, so generally, the longer you're on chemo, the worse will be your side-effects. Fatigue had me falling asleep, it seemed, every few minutes. Physically and mentally exhausted for months on end. I was mostly fairly immobile but one thing that can help fatigue is exercise - possibly a couple of short walks a day, even of a couple of minutes, is good.

Swollen feet, ankles and legs. Very uncomfortable.

Peripheral neuropathy - pins and needles/numbness/pain in limbs. Has affected my legs and appears to be permanent. Sometimes, meds are adjusted to try and minimise this, as far as I know.

Chemo brain/steroid psychosis - Confusion, forgetfulness, memory problems, hearing or seeing things,. Steroids can make people have an uplift of energy, a better appetite, be prone to emotional outbursts of elation, anger, crying for no reason. When steroids are stopped, there's sometimes a crash. I never got the crash and only got angry twice, which was over nothing and over in seconds. Once these side effects are recognised, they can be controlled or ignored. Or at least, they could with me. I think everybody concerned should be aware of these and make allowances accordingly.

Pain, particularly bone pain. Can be severe. With slow release morphine as well as oral morphine, occasionally paracetomol, I managed to get pain free for a time. After 30 years of chronic pain, this was a revelation. Pain meds, if needed, should be taken consistently rather than waiting untill it gets to a certain level, when meds become less effective. Morphine however, can add to confusion and brain fog, which I didn't care about. 

Blood clots/DVT risk is heightened; the more mobile one is, the better. I used to give myself a fragmin injection every night.

Nausea - For me, one of the worse side effects. Hate it. Luckily, anti-sickness meds worked. Almost instantaneously.

As said, side-effects are cumulative. By the end of cycle 4/5 I found it a real effort, everything was a struggle.

Hope this is of some help, it's all I can think of for now. Remember, any quezzies, I'll do my best to answer or point you in the right direction.

Regards

Taff