[lilibParticipant]

Mulberry – thank you for your very reassuring post. It’s good to know that people are able to get on with their lives and forget about Myeloma for a while, especially when someone is struggling with side effects of treatment.

Anyway – after a truly horrendous week for my husband, when he basically shed all his skin (sorry if that’s TMI), we were somewhat amazed to learn that his paraprotein levels had dropped by about 40 (is that per cent?). The Consultant seemed pretty impressed, so I guess that the suffering was for something. He is about to start the second cycle today, but just the V and D of the VTD treatment.

His mobility has improved enormously, too, and he has even thought about getting in to the car and driving – although I think he should try in an empty car park or somewhere very quiet first…

[lilibParticipant]

Just reporting in to say that we had the medication review yesterday and my husband is to restart the induction treatment, but without Thalidomide. His paraprotein levels had reduced by a huge amount, so I suppose that is some compensation for the agony of the skin-shedding. Complexion and skin pretty much back to normal now after a two week break.

[lilibParticipant]

Hello Vincent,

Well yes, I agree with what you say about personal choice. However, as someone new to this Forum, I was rather perplexed by the number of replies to newcomers and others which suggested that there would be a lot more information available on a Facebook group. If you like, I was wondering why people were being directed there when a forum specifically for Myeloma issues already existed here.

The reply from Graham seems to reassure me that I am not missing out on anything by not joining Facebook!

[lilibParticipant]

Thank you, debbies and Graham. That is interesting about Facebook. Having never used it, I didn’t imagine that the ‘traffic’ on a Myeloma site would be so high, so I guess I don’t mind so much about being excluded now. It would be mighty tedious to be reading the same queries over and again, and I think most Carers and patients have got better things to do with their time.

Best wishes to you and yours,

Lili

[lilibParticipant]

Hi landykeith,
My husband started his VTD treatment about two weeks before you. Re the mobility – he hasn’t been at all mobile since a few weeks before diagnosis, and can just about walk to the car for me to take him to hospital. The consultant seemed unconcerned about that when I raised it. However, I think that if he had shown signs of breathlessness, I would have flagged it up to someone – perhaps the CNS?

This treatment so far has been full of challenges – everything seemed to be going swimmingly for the first four weeks, and then, suddenly out of nowhere he developed a rash. Just be aware of your body, and if something is bothering you or doesn’t feel right, I wouldn’t hesitate to contact one of your team. That’s what they are there for. I would hope that they are quite used to us Newbies calling about things. We’re all on a steep learning curve.

Good luck, and may your treatment be trouble free.

Lili

[lilibParticipant]

Just posting to say that I am afraid that the saga continues. Another week, and still the rash. Husband has been taken off all the medication now and all treatment ceased until a med review at the end of next week. So unfortunately these side effects don’t always go away with time it seems.

[lilibParticipant]

Thank you for replying, Ellen. OH is asleep again now (after a pretty sleepless night), so I am going to slip out for an hour. I may call later in the day. I think I have got control of my panic for the moment, but it doesn’t take much to set it off again.

[lilibParticipant]

Hi Panda,
Hope that everything went OK for you yesterday with the Consultant, and that you got answers to some of your questions.

Take care,

Lili

[lilibParticipant]

Thanks, Panda. We are getting through it (tougher for the patient than the supporter in this case.) Hope all goes well on Friday, and that you’ve got all your questions prepared to interrogate (!) the Consultant.

Poor you and poor granddaughter. Hope it’s not too long until you can work something out and be together.

Lili

[lilibParticipant]

Reporting back after a nerve-shredding weekend for me (the supporter) and an itchy sore weekend for him (the patient):

I sent an email to the CNS to advise that we were attending the Haem. Day ward today, and that now the rash covered more than 80% of the body, including the face, and lips were very swollen. Their opinion was that it was the Thalidomide which was causing this, so have stopped that, but also stopped the Allopurinol, and given him antihistamine to improve the rash situation.

I am quite weary – I know that they are all very busy, and they also have Covid to consider, but it turns out that we were not given a medication diary when we started treatment, so I was unaware that some drugs were just for the first cycle. I have tried to get things in writing or email because lots of little bits of information are either not told to me, or they are told to the patient, who forgets in amongst all the many things going on. And when all this kicked off at the weekend, I had no access to anyone who knew the patient until today (Tuesday).

[lilibParticipant]

Hi Gizmo,

Very sorry to hear all the pain you are experiencing. I don’t really have any advice to offer as I am also a newbie at this, and finding that even if you have the best medical team in the world, you still have to sometimes shout a bit louder to get what you really need.

Perhaps it would be useful to email or speak to one of the specialist nurses on this website? I haven’t tried it myself, but they might be able to point you in the right direction.

My very best wishes, and hope that you get an appropriate diagnosis/treatment soon.

Lili

[lilibParticipant]

Thank you, Jane. That’s good to know. Thank you so much for replying this evening. I might manage to get to sleep! Was your antibiotic Ciprofloxacin, by any chance? If so, we may query that tomorrow, too.

Best wishes for your husband’s SCT.

Lili

[lilibParticipant]

My husband is at the end of the first 4 weeks of VTD, and started to get a rash yesterday morning. Total panic here – I rang the emergency number (why do these things always happen on a weekend?) and they felt it was probably reaction to the anti-Uric acid drugs. Today, the rash has spread all over his body, so I rang the day ward (our CNS not in work on Mondays). Still worried. But they told us to come in tomorrow morning if it’s still there. I really hope it is just this reaction to the drug. I am feeling very concerned and unsupported. Husband is having a sleep.

Jbal – am I right in thinking that you only took the anti-Uric Acid drugs for the first month of treatment?

• This reply was modified 2 years, 8 months ago by  lilib.

[lilibParticipant]

Hi Mulberry,

Many thanks for your positive post, and for giving lots of hope to many people looking in on this forum. So good to hear that you are doing so well.

We are not having a good day here, but thanks to you I believe that this, too, will pass.

Lili

[lilibParticipant]

Hi Panda,
Sorry to hear that you had a low point yesterday. I hope that you were able to give yourself a treat or something to make the time pass. It happens a lot, so I suppose that one needs to have a distracting strategy to get you through those worried times.

I hope that the interview goes well for you on Wednesday. My husband and I both retired early, but I still do some occasional work. I haven’t taken any on since his diagnosis because I wasn’t sure how well he would manage on his own for a day. I’ll do half-days to begin with. Sounds like the role you are applying for is pretty flexible, so that’s good.

Is your GD old enough to chat with you on Zoom? If you have to isolate from her, perhaps that will be a (poor) substitute for keeping in touch with her, and she may like speaking to her grandmother ‘on the television’. Some small children seem to take to it like the proverbial ducks.

All the best for a good and positive week!

Lili

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