[mriampositiveParticipant]

I am looking for any advice to help me over the shock of the diagnosis of having MM. I was due to start my treatment last week but as I had a high temperature I ended up being admitted to a ward for two days. I am due to start my treatment tomorrow (Tuesday 13/12/22) if anyone can give me any advice about the treatment and any questions that I should be asking my medical team I would be grateful.

Many thanks
Graham

[richfsModerator]

Hi Graham, thanks for starting this topic, my earlier responses to you are in the Anyone had Covid? topic.

All the best for today, it will become more normal going in for treatment, but may seem a bit time consuming today, I don’t find that any of the drugs made me feel queasy or anything, you don’t really feel them going in.

Rich 👍

[mulberryParticipant]

Hi Graham

We all feel totally absorbed by the shock of diagnosis for some time, the first thing we’ve thought about in the morning and the last thing at night. But it doesn’t go on like this. One day you’ll find yourself absorbed in something else for a while, and that will mark the point of gradual assimilation of myeloma into your life . Your life will be pretty dominated by myeloma while you are on induction treatment & transplant if you have one, but afterwards Myeloma very much is backstage. And this bit can go on for many years, and is more likely to do so for your generation of myeloma patients with a 4 pronged attack on the myeloma.

The start of treatment is like leaping into the sea off a ledge, the intrepidation is enormous, but you will soon find yourself swimming….

Despite having 4 anti cancer drugs, and others, you shouldn’t experience severe side effects since the drugs are all targeted at myeloma cells, doing little collateral damage to other cells. I didn’t have immediate side effects from my induction drugs, but when I was diagnosed daratumumab wasn’t available, so one less than you, and that one occasionally initially causes immediate side effects of various sorts so you will be ‘kept an eye on’ after the daratumumab and will be at the hospital some time today, eventually emerging with an enormous carrier bag full of drugs, and a confusing list of when to take them!

You will soon be on familiar terms with the nurses (& receptionists) in the day unit, I missed mine when I no longer needed to see them!
With best wishes,
Jane

[tony642Moderator]

Hi there,

I had a SCT almost 3 years ago, and have been classed as in remission without any maintenance treatment since then. To be honest, the treatment is not pleasant, but it only lasts a few weeks, so for me, it was worth it. What specific questions do you have about the treatment?

Regards, Tony

[kh0305Moderator]

Hi Graham,
Sorry to hear of your diagnosis. It is always a shock to hear the C word, especially when it is such an unfamiliar one and you’re not sure what is happening. Dad was diagnosed back in 2013 with MM and it was a huge shock but he’s still with us and after his SCT in 2013 had 7 years of living a normal life before relapsing at the end of 2020. There are lots of ups and downs and the treatments can give you side effects but on the whole they aren’t too bad and remember they are for the most part temporary. Even going through treatment at the moment, Dad has been away on several breaks and though not 100% is able to do everything he wants and his bloods are heading in the right direction.
I found writing questions down as they came into my head to ask at consultations was very helpful, as was jotting down all the information they gave us as it can be very confusing at first with lots of new terms and drug names to absorb! Also, don’t be afraid to ask your medical team as many questions as you need. We found dads team to be super helpful and reassuring. xx

[richfsModerator]

Hi Graham,

Just checking in to see how you’re getting on with your treatment? Did it go ahead last Tuesday, and are you now in week 2? I hope that you’ve been given a lot more information about the process, and your actual diagnosis and blood markers (paraproteins or light chains). Whilst the whole treatment process can take many months, the first cycle of treatment can be very effective in combating the effects of myeloma in your body.

Wishing you well, do let us know how you’re getting on.

Rich 👍

[mriampositiveParticipant]

Hi Guys
Thanks for your responses. My treatment is going well, the only side effects that I have suffered so far are insomnia on the days that I have Dexamethasone (2 days per week 40mg at present). I have also had pain in my left Achilles but it is easing as I am resting it. I have only had one meeting with my consultant but I have an appointment with her on 29th December, my Clinical Nurse contact is coming to see me when I am having my Velcade treatment at the hospital tomorrow (Fri 23rd Dec), she may move the appointment back to early January depending on our conversation.
I would be interested in anyone giving me more information about the stem cell transplant i.e. the process, timescale, is it painful etc etc.
Many thanks
Graham

[richfsModerator]

Hi Graham, good to hear that things are going OK. Yes, Dex is rather ‘disruptive’ to sleep!

Do ask clinical nurses about everything and anything, their day-to-day, hands-on experience is invaluable.

The SCT is a long way off yet, I wouldn’t think too much about it until you’re getting towards the end of the induction chemotherapy that you’ve just started. Most people say that their haematology team make the SCT sound much worse than it actually is as they have to warn you of everything that could go wrong with it, and they certainly emphasise the side effects, but when it comes to it most people find that whilst it’s certainly ‘not much fun’, it is quite manageable. You’ll get plenty of information from your transplant team about the timings and process, and of course we can all share our own experiences with you.

Take care,
Rich 👍

[mriampositiveParticipant]

Hi Rich
Thanks for your quick response.
Hopefully I will see my Clinical Nurse tomorrow and ask her for more information. I have a couple of big events next year that I would not want to miss if possible. My daughter’s 40th surprise weekend getaway on 10th Feb to forest lodges and my son’s wedding on 1st July.
Kind regards
Graham

[maldemerParticipant]

Hi Graham
I would echo Rich’s advice on focusing on the induction process at the moment; my own went very smoothly apart from dex-induced sleeplessness! However, if you want a quick, positive snapshot of how my own SCT went – I posted ‘my story’ on the Forum yesterday pm.
Fingers crossed for you – and all of us!!!
Nick

[mriampositiveParticipant]

Hi Nick
Thanks for your comments, I have a meeting with my consultant today and will hopefully get some answers to my questions. I am in my last week of my 1st cycle and all is going well, the only issue that I have had is damage to my left Achilles, I also managed to trip going downstairs last night and have pulled a muscle just below my left calf so hobbling about now( that will teach me
to have one hand free to hold on to the hand rail 🙁).
Regards
Graham

[mriampositiveParticipant]

Hi Guys
I met with the consultant yesterday and it was the top man that I saw this time, he gave me a lot of information and answered all the questions that I had. I have IgG Myeloma and my pre-treatment level was 53g/l after my first cycle of treatment it is now 40g/l which he was pleased with. He discussed the SCT with me and has sent a letter to get me on the radar of the SCT team. I am feeling much more positive after that meeting and hopefully all will continue to progress well, I start my second cycle of treatment on Tuesday (10th Jan).

Regards
Graham

[maldemerParticipant]

Good luck with the cycles, Graham – mine worked wonders in preparing me for the SCT!
Nick

[richfsModerator]

Thanks for your updates Graham.

I’m glad that you’re now well informed having seen the top consultant. It is so much better when you know what’s going on, and what is planned.

Your IgG paraprotein level was perhaps slightly higher than mine when I started treatment in 2019 (on VTD, as it was then), and it’s good to see that it’s coming down.

I hope that the treatment schedule enables you to join in with the family celebrations this year, it’s good to have some definite things to look forward to.

Do be careful on the stairs!!

Best wishes,
Rich 👍

[mriampositiveParticipant]

Hi Guys
Thanks for your comments and support.
Graham

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