[KWilsonParticipant]

I find taking a pain killer that contains codeine (sp?) helps with the restless legs syndrome. You can buy them over the counter but it's better to get them prescribed with all your other 'stuff'!

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[anneParticipant]

Hi my name is anne, my husband was diagnosed last july. Since then he has been on CDT and velcade, both of which worked initially then failed. He was given revlimid, which gave him a bad rash which he had to stop. We were devastated that all these had not given remission. He has now been given an infusion of melthalon (slegehammer approach), but has been really sick since and is now in hospital on a drip. Does anyone else have any experience of melthalan in high dose infusion and have bad sickness?

[KeithH17Participant]

Hi Anne,I was given a high dose of Melphalan prior to having my first SCT and it wiped me out completely.
I could'nt keep anything down for the first 10 days and was on a drip for a week while in hospital.
I lost a stone in weight due to the fact that the drug vertually destroys the digestive system and it took a further 3,months before I started to feel more like my old self.
That said this approach is neccessary to give the MM a good kicking and there's nothing better than Melphalan to do just that.
It's not easy but at some point things will start to improve.

Take care…Keith.

[MinParticipant]

Hi Anne
Sorry to hear your husband is having such a bad time. But I am pleased you found your way to the place where we can offer you support of whatever kind you need. Its a shame that he was not able to respond to anti histamines for the rash, but did he respond well to the Revlamid otherwise? My husband is on his third line treatment too, having relapsed with both the others. He is on Revlamid and uses antihistamines to prevent itching that it caused.( I think he gave it to me as I do the itching now Ha Ha)
I think its melphalan that your husband has been given. Download the info guide called high dose therapy from this web site and you will get more of an insight into how sick it makes you.
If I am correct this is the part of the treatment that all MM patients who are going to have a transplant have, to kill off all the remaining MM cells in the bone marrow.In essence it is high dose chemotherapy, very few people are able to withstand this without feeling and being really sick.(nausea) I am sure the medical staff will be giving him the kind of drugs that help to prevent it, but it does make for a really bad time for the patient.
I am sure there are other people with more expertise in knowing the side effects of melphalan, but my husband did not suffer too badly from it as he had regular drugs to keep the sickness at bay. The secret is not to wait till you feel sick, to ask for the drugs; but to keep them topped up to prevent it happening.
Where is he being treated, someone on here will be familiar with his consultant, and nurse specialist to whom you should be able to direct questions.
I hope he starts to feel well soon, don't despair, as Im sure he is in good hands, and they will do all that is necessary to get the darn beast under control; even though he is suffering at the moment.
Sadly part of the treatment is to make people unwell in order to make them well. How strange!
Come back and let us know how you are doing as I know how draining it can be to watch your husband so ill, and of course keep us up to date with how he is.
Take Care
Min

[anneParticipant]

Thank you Keith and Min for your replies, its always good to know you're not alone, anne

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