[bernardParticipant]

Hi. I started IRD in June last year. On my 7th cycle now. The thing I didn’t know is that from now on i, it seems that chemo is a permanent part of your life, which came as a shock to me. The biggest side effects are fatigue, lack of sleep and the desire for eating! The steroids tend to be the reason for all of the above. I was on 40mg and have just dropped to 20mg to see if that helps. You can get sleeping tablets to help with the lack of sleep but I use them sparingly. I find I get a little high for a couple of days after steroids and then crash about 4 days after steroids. I am not aware of any specific side effects from I OR R.

Congratulations on the 10 years. I’m not there yet.

Good luck.

[bernardParticipant]

Hi. I was cancer free after my first line treatment but went ahead with my stem cell. I feel it did give me extra remission but of course I can’t know for sure. I’ve had a second stem cell procedure and on 3rd line treatment and this all helps to extend our lives I guess.

[bernardParticipant]

Hi

I had zometa every 4 weeks without any side effects I now have it every 12 weeks again without complications. Perhaps it eccects people in different ways?

[bernardParticipant]

I personally opted for my second sct after saying I would never have it again. I do believe it increased my remission periods. The first remission was 5 years and the second 2.5 years. Kind of eha5 was expected. On 3rd line treatment since June 2020 so hope to stain remission to about December this year or a bit longer. The annoying this is that this is now continuous chemo which I hadn’t appreciated, so I get the side effects which do seem to worsen over time, such as lack of sleep. I’ve been awake all night and due to get up in 90 minutes time. Plus moodyness and over eating, which I blame on the steroids. This week he cut them from 40mg to 20mg so let’s see if that works. Good luck to you all!

[bernardParticipant]

Hi all

I haven’t posted in about 3 years as I have been well but like Scott, my lambda has increased to about 70 and my ratio is 3 times the the high in the normal range. My oncologist (at barts) started talking about treatment options when I say him recently which was the first time this has been raised since my SCT in 2015. However he said nothing will happen yet and I see him in 3 months time do look at other markers such as calcium in the blood etc and these all seem fine. So like Scott, I guess the MM has returned but is at a low level which will not need to be treated as yet. I do remember the treatment not being fun and the sleepless nights etc, all whilst trying to work. I am 3 months into a new job which I love and it involves lots of travel and I don’t think I want treatment yet! Currently I feel fine and I am hoping that the recent acceleration in my lambda light chain marker may slow down a bit.

Good luck to all and stay positive – lots of new drugs on the market I’m told to fight this disease we will have.

• This reply was modified 6 years, 5 months ago by  bernard. Reason: Typos

[bernardParticipant]

Hang in there! It feels like crap when you are diagnosed. I was the same age as you. My back collapsed 2 days before I was going to take my kids on a. Road tour of California. So I had to tell them no holiday plus I had cancer. I was in hospital for 2 weeks as I couldn’t walk with my back, morphine at night to ease the pain. I also had caught salmonella poisoning on a business trip to the Middle East which fortunately the dr’s picked up before it affected me. It did mean that I couldn’t have a back operation for 3- months as salmonella hides in the bones apparently.

It was exactly 1 year today that I had may SCT, I play golf regularly, I have done the first item on my bucket list and all is good. Yes I know it’s going to come back and there is no cure but live for now not the future.

I remember the dark days after being diagnosed and it is dark but start your treatment, know that it works and try and stay as normal as possible. I only had 2 days off work during my treatment (my 2 weeks in hospital was my 2 weeks holiday) and I enjoyed the normality of work and doing normal stuff.

Thebone pkus point of  having to use a stick for a few weeks was that I got to the front of the queues in the supermarket!

I hope this helps

bernard

 

 

[bernardParticipant]

Hi Sarah.

There is some great advice on here which I hope you are picking up on. MM is very scary but you can read some fantastic stories on here of people putting it behind them. The treatment can be rough and some of us get side effects (I have neuropathy in my feet which can be discomforting) but life does go on. The only reminder for me is the monthly visits for zometer and my quarterly blood checks. Otherwise I try and forget it and just get on with life.

I hope all goes well for you.

Ps. Don’t forget those around you. It can sometimes be harder for them than it is for you as they often feel helpless. Keep talking to them, bring it out in the open so it doesn’t become a taboo subject and laugh at yourself when you can, as others will laugh with you. I find that makes me smile. 😀

[bernardParticipant]

Some interesting results today from the US on ‘killer T-cells. Sounds similar to the treatment described above. All part of the immunotherapy treatment. 90% of those treated in the study (who were all at last base for treatments) went into remission so that’s encouraging. Very early days yet and no data published but good news at least. There was a panorama programme on immunotherapy last year. I watched it whilst having my stem cells harvested. It was all very encouraging until towards the end when some of the patients they were following relapsed. It seems that the cancerous cells mutate over time to fight against the new treatments. However still 2 steps forward in my mind….even if it comes with 1 step back.

Stay healthy everyone.

bernard

 

[bernardParticipant]

SCT at aged 70? Fantastic news. Gives hope to us younger ones who have undergone SCT already at a younger age. There is still treatment possibilities as you get older. Good luck to you all.

[bernardParticipant]

Hi Millie

things do get better. I had the collapsed vertebrae that led to the diagnosis of MM and it was a shock. I had never heard of it and when I understood what I had I thought my life had ended. That was 24 July 2014 and I am still here. The treatment can be hard at times and I had the SCT this time last year which was hard as well but it’s all worth it. I am back playing golf for the last 8 months. I ticked off the first item on my bucket list last October (to take my daughter to NY) and life goes on and back to normal. It’s always in the back of your mind but as others have said, stay positive and live your life to the fullest. There is plenty of light to come.

Good luck. Bernard.

[bernardParticipant]

Val

take the precautions recommended but to be honest get him back to normal as soon as you can. The odd germ won’t do any harm and will help the immune system do what it’s designed to do. Also get him out for fresh air and exercise. Good for the body but also the mind. Hospital for SCT was mind numbing and I was glad to get out and do normal things. I took my daughter to NY during October half term (bucket list made whilst having my SCT) and I left all my meds at home by accident. I caught a bug …..and have never recovered quicker! So get him out and back to normal things and enjoy life.

Happy Christmas as well. 😀

[bernardParticipant]

Great news Karen. I was lucky enough to go back to work about 6 weeks post SCT and I haven’t looked back. You should find yourself getting stronger each day and enjoy this time. As one of my consultants said to me ‘it doesn’t get better than this’ so enjoy it. It’s a pain having to do Zometa every month and each quarter my anxiety levels go up when I get my bloods checked but it makes me savour the days I have now. We all don’t know what’s around the corner!

Healthy living all

 

[bernardParticipant]

No harm in using a buggy David. The fact that you are out playing is great. Beats sitting in a hospital bed doesn’t it? It took me. A few months to build up to 18!hiles so take your time. Use the buggy, then after a while maybe try 6 holes walking, then 9 etc. That’s what I did. It was an objective of mine to get back out and now I’ve done it I feel great about it.

Keep on going, you’re doing great.

[bernardParticipant]

Dave. I have quite bad neuropathy in my feet caused mainly I’m told by the thalidomide. The muscle loss in my legs was due to the dex steroids. I tried pregabalin but had a major itching reaction to it so had to give that up. I have been using amitriptyline for about 2 months now. I finished chemo at the end of last year so I am further along than you. My legs have grown stronger with exercise (& no steroids) and I can now manage 18holes of golf I think due to the <span style=”line-height: 1.5;”>amitriptyline. I can’t be sure as my consultant said to me today that the only true way of knowing is to stop taking it and see what happens which I don’t fancy doing. I was on 10mg and then doubled to 20mg. Drowsiness is a side effect but I am no worse with 20 than I was with 10 but I actually find it helps my sleep if I take it a couple of hours before bed. It might be that the steroids are not fully out of your system yet so it may be countering the drowsiness from </span><span style=”line-height: 1.5;”>amitriptyline? </span>

What I have learnt is that you need to give these drugs time  give it a couple of months or so and see what happens then. After chemo I found it hard to stand up for longer than 5 minutes without pain. Now I am back playing golf for 18 holes and can just about do it  it takes time but keep at it.

Bernard

 

[bernardParticipant]

Hi

i had thalidomide and it caused me neuropathy which I still suffer from. However, I recently completed my first 18 holes on the golf course. There are meds for neuropathy so ask your consultant. The pins and needles and numb feet are still there but manageable.

Good luck.

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