[sandy123Participant]

Hi Paul,

I’m really sorry to read about your wife’s experiences.

I am presently on third-line treatment. While I was waiting for a decision to be made I read a lot about clinical trials, which Mulberry has also mentioned. Unfortunately for me, I did not meet the inclusion criteria for the ones that were local to me at this moment but I did feel excited about the thought of taking part in a trial for many reasons.

Trial drugs are often potentially more advanced than what is on offer from the NHS. Also, as far as I understand, a trial doesn’t count as a ‘line’ so it gives you an extra chance, so to speak. Also I liked the thought of contributing to medical advancement in a small way. Theres also something about compassionate drugs which I don’t fully understand but it could be worth asking about.

I think if you ask on the Myeloma Infoline you can get advice on this and Blood Cancer UK also have a specialist clinical trials nurse who will help you search for suitable trials, just in case this gives your wife a bigger range of options.

Your wife and daughter are fortunate to have your support in this period between jobs. Keeping up morale is a challenge with myeloma in any case but all the more when treatment isn’t going to plan. I’m thinking of you all and hope you will find a treatment plan that brings improvement and hope.

[sandy123Participant]

Hi hally24,

I’ve had two stem cell transplants, so from that you can see I was willing to go back and have a second one. It is indeed very off-putting at the beginning when you are told all the things that can go wrong (they have to tell you) but the prize is the remission time that you can get, which is really worth having.

I found that the procedure had been fine-tuned between 2012 and 2020 e.g. they freeze the stem cells in smaller bags so fewer of the precious cells are lost when defrosting them. My hospital stay was only 14 days for the second transplant. I had a Picc line instead of a Hickman line, which was far easier to put in and remove, and I think this tends to be the preferred kind of line now.

Absolutely yes do follow kh0305’s advice about sucking the ice lollies non-stop during the melphalan treatment. I didn’t know about this the first time and had terrible mucositis whereas after trying the ice lolly trick I only had it very mildly and this made a huge difference to my recovery. I’ve also read that some people continue with ice lollies for a while after the infusion has finished.

The nurses on my ward in 2020 were great about making me Scandi-shakes with ice-ceam on top as they said it is important to keep up your protein intake even if you’re not feeling very hungry. These were nicer than Fortisips.

The good things about hair loss (compared with having a long course of multiple chemo treatments) is that almost as soon as your hair falls out it is getting ready to grow back. The first time round I wore a wig for a while but the second time I just wore headscarves which give plenty of air to the scalp. My hair was a bit more wavy than before but still isn’t grey.

During my time in hospital I did have sickness and upset stomach but almost as soon as I got home these problems disappeared and it was a question of building up strength again. If you ask for a physio to visit you during your stay, they may give you exercises with stretchy bands and an exercise wheel (you sit in a chair and pedal it) and I tried a bit of marching on the spot to music too just to try and build up a bit of strength.

I don’t know about tomatoes…I thought the smell was like sweetcorn… but there definitely was a funny smell!!

I hope this helps and wishing you all the best for 24th July.

[sandy123Participant]

Hi Twinz,

Like @maidmarion I was given a letter containing a list of appropriate vaccines when I was discharged from my SCT in 2020. As far as I understand it, we have to avoid live vaccines so I was not given all of the childhood ones. My list contained things such as pneumonia (2 types) and meningitis.

I was not given the Chicken Pox jab (being one of the live ones) but found out quite recently that we can ask for the non-live Shingrix vaccination against Shingles. It does not promise to stop you catching Shingles but apparently it can greatly reduce the severity of symptoms if you do catch it. It seems that this is not given automatically and you have to ask your consultant or GP to prescribe it for you. I had my first one about a month ago.

I realise that you posted this a few weeks ago and hopefully by now you have your appointments all sorted or if not, that you will do very soon.

• This reply was modified 11 months, 3 weeks ago by  sandy123.

[sandy123Participant]

Hi Jennya,

I think this is a really important question but it can be oh so hard to get information about therapeutic treatments suitable for myeloma patients.

Before Covid, I belonged to a health club which offered massages. One of the therapists there had been trained in what I thought she called ‘Teapot Massage’ but is in fact tpot https://www.tpot.org.uk/ which is meant to be especially appropriate for people with cancer. Obviously with cancer we don’t want to stir anything (bad) up which can be a concern with massages, and I think this is taken into account in the training.

I had one tpot back massage and it was really nice and relaxing but then along came the pandemic and my membership expired.

More recently, I have been going to a reflexologist who has a treatment room on the side of her house and always does a Covid test before I attend for an appointment. I find this is very good for general relaxation and for the management of treatment side effects. I would not say that it works on neck on shoulder tension, which I always have, as directly as the massage did.

As with anything, do check with your healthcare team and I hope you also find the tpot website helpful

[sandy123Participant]

Hi all,

I have just started IRD for second relapse and the familiar foot-tingling is starting already. I echo Rachel’s recommendation for Frankincense and Myrrh Neuropathy Rubbing Oil which I have used during previous treatment and I’m always amazed at how well it works. In Chinese medicine at least, there seems to be some scientific thinking behind it e.g.https://www.sciencedirect.com/science/article/abs/pii/S0944711322006286#!

It was fortunate that during my two periods of remission, the symptoms went away however now that I am on long-term medication (having used up both SCTs) I am thinking of trying reflexology once a week for added measure. I am going to my first session this evening and I’ll let you know if it helps.

[sandy123Participant]

@lottie I think I have just posted this in the wrong place on the forum (oops).

I’m so pleased to hear that your transplant has already happened and has gone so well. I am very sorry to hear about your brother-in-law, though. It sounds as if you’ve had many hard things to face this year. The 100 days is quite a significant milestone after a transplant. I hope you will continue to make good progress.

[sandy123Participant]

Hi @lottie and @Judy,

A myeloma diagnosis can come as such a shock and so out of the blue. I remember that feeling as if it was yesterday (in fact it was nearly 11 years ago). So much progress has been made with new drugs and treatments during this time and I hope you both will derive great benefit from these promising new therapies.

I have had two Stem Cell Transplants. The first one lasted over 5 years and the second one over 2. I was terrified the first time but willingly went back for the second one and I would do it again if it was possible/allowed (two is the maximum).

It sounds as if you are gathering lots of helpful information already and this forum is a great place to share things. Are you also aware of the https://www.myeloma.org.uk/help-and-support/peer-buddy-service/ ?This is where you can elect to have a series of conversations with a trained volunteer – who also has myeloma – via 6 Zoom meetings or telephone calls. You can suggest the kind of topics you would like to discuss and will be paired with someone suitable to match your request, e.g. someone who has recently undergone a Stem Cell Transplant.

I am currently in a tricker phase of my journey at second relapse but I would say that living with myeloma has taught me a lot. I made my peace quite early on with the treatable though incurable (yet) nature of the disease and try to live very much day by day, enjoying all kinds of things that I used to take for granted.

For you both, I hope the feeling of shock will ease with time, that you will gather plenty of support around you and that you will respond really well to your treatment.

[sandy123Participant]

Thank you for your interesting post @mulberry This is indeed VERY frustrating! I had always hoped to remain in remission long enough for CAR-T to become approved as a third-line treatment but sadly not yet.

I believe there are various trials for bi-specific antibodies in progress in the UK e.g. MajesTEC-3 (Teclistimab) and MagnetisMM-9 (Elranatamab) but we will have to watch and wait to see how/when/if these clinical studies will translate into approved treatments in this country.

[sandy123Participant]

Thank you everyone for your helpful replies to my post about IRd treatment.

Thank you @bernard for the advice on managing dex and for explaining that the high dose at the beginning of treatment can be lowered if all is going to plan.I agree with you that the thought of being on permanent chemo has been a shock for me too. I was never offered maintenance treatment between transplants so I have been fortunate to have two blocks of drug-free years, apart from Zoledronic acid infusions. That’s great you’re on your 7th cycle and I hope all continues well for you.

Thank you @alanr for the encouragement about your light chains responding so well to the IRd. Thats amazing! My consultant hasn’t mentioned my light chains this time round – I think for me it will be about the paraprotein counts reducing and I have a high percentage of abnormal plasma cells in my bone marrow – but of course that can only be monitored by having bone marrow biopsies (not such fun). That’s also hopeful that you haven’t found your sense of taste affected as I did not enjoy that metallic taste caused by some previous treatments. I hope your light chains will continue to go down.

Congratulations @janw on approaching your 13-yr anniversary! That is really encouraging to hear. It sounds very hopeful to me that the IRd has been keeping you steady for 5 years so far and long may that continue.

I’m also encouraged to hear @kh0305 that your side-effects have been less troublesome than those from DVD. I had DVD before my transplant so I remember what those are like!

Sorry for the long message. There’s a problem in my local clinic so I haven’t actually been prescribed the treatment yet and I’ve been busy chasing that and haven’t logged into the forum since my post. I really appreciate all these responses. Thank you 🙂

[sandy123Participant]

Hello @kh0305,

I’m so pleased to read that IRd is working well for your dad. I might be starting that soon, so it’s encouraging to know that he is plateauing. Does he find the side-effects manageable? I hope that he will continue really well.

[sandy123Participant]

Hi Ethan,

I’ve just read your posts and wish you all the very best for your SCT. Sometimes it’s a relief to get on with it after all the waiting and wondering.

I echo Mulberry’s advice about sucking ice or ice-pops throughout your melphalan infusion. I’ve had two transplants: the first one without ice gave me terrible mucositis that really interfered with eating and drinking and hence my recovery in general. By the time I had the second one, I had read about the ice-lolly trick and just had it very mildly and was out of hospital in half the time.

I didn’t know about using it before and after the infusion as well, though, which sounds like good advice. I hope that all wards keep ice lollies in stock now.

Do let us know how you get on, when you’re feeling up to posting.

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