[meganjaneParticipant]

Hello Nicola,

I hope your Dad's hands warm up soon. Phil discussed it with the Doctor yesterday and they reduced the dose of velcade he was given. Hopefully this will help, Phil's feet were still cold last night but today he actually didn't notice it until I foolishly asked if his feet were still cold and that brought them back to his attention! They are still cold but he thinks they are better as he was able to block it out until I mentioned it so it may be psychological because he has had a reduced dose of velcade and was hoping that would fix the problem or maybe it actually is getting better, only time will tell. I certainly won't mention them again unless Phil brings it up first! I hope your Dad is feeling better soon, it seems to take quite a bit of time for everything to work it's way through the system.

Megan

[meganjaneParticipant]

Hi Kevin,

Great news about your light chains and bone marrow biopsy and it is nice to hear that the side effects went away once you finished treatment. My husband Phil is on his 6th and final cycle of dox-dex-velcade and he has had a few new side effects pop up in the last week that we are hoping will disappear after he finishes this cycle.

Jean – my husband Phil is on a different type of treatment to Frank but part of the clinical trial he is taking part in is seeing if the use of Velcade in the first line of treatment can delay the need for a Stem cell Transplant. In order to delay the stem cell transplant his paraprotein levels need to drop 90% (so in Phil's case down to three), if the paraproteins reach this level they will monitor him and delay the transplant until the levels start to rise again but if he does not get down to three we will go ahead with the stem cell transplant immediately. As Frank is already at 2 I don't think there will be any problem. Zero is the ideal but I don't think many people actually get their levels that low. Hopefully your Myeloma nurse will be able to confirm this for you.

Megan

[meganjaneParticipant]

Hi Dai,

We spoke to a doctor again today and they reduced the dose. Phil only needs one more injection now on Saturday and they will reduce that dose as well so hopefully it will not be a long term side effect. Very frustrating that the medicine you need to get better can cause other problems.

Thanks for sharing your experience. I hope your DVT improves soon.

Megan

[meganjaneParticipant]

Hi Keith,

Phil did mention it but the Doctor was not too concerned, we will mention it again more forcefully when we go in on Wednesday as it is bearable as a temporaray side effect but Phil would not want it to continue long term! It is often hard to tell what is caused by the Myeloma and what is caused by the medication but we are sure this is a result of the Velcade. Thank you for the advice, this forum has been so helpful to me being able to read what other people have done in certain circumstances and reading all the information that is shared by everyone, it has made things less scary knowing we are not alone.

Megan

[meganjaneParticipant]

Dear Eve and Slim,

Thank you for posting your good news, you are right, for those of us at the start of the journey who have already experienced a few hiccups it is lovely to hear positive news. Enjoy your travels!

Megan

[meganjaneParticipant]

Hi Emma,

It is my husband Phil who has been diagnosed with MM but I have read him bits of your blog as so many of your experiences have been similar. I am 38 and Phil is 44, he is also on the PADIMAC trial, a bit ahead of you and Alex but a bit behind Helen. If you have any questions feel free to ask, Phil has already had five sessions of radiotherapy on his legs. I hope your bad news Wednesdays soon become good news Wednesdays as you continue to respond to the treatment and the paraprotein levels continue to drop.

Megan

[meganjaneParticipant]

Hi Pat,

I am so glad to hear that things are going so well. My husband Phil is also using a pill organiser to keep track of things, it is amazing how easy it is to forget if you have taken everything, especially when there are so many to keep track of!:-) Phil has also been surprised by the relative lack of side effects – long may it continue for both of you!

Megan

[meganjaneParticipant]

Hi Jean,

Thanks for sharing this link, it is always nice to hear positive messages, especially from people researching MM.

Megan

[meganjaneParticipant]

Hi Joanne,

I am sorry to hear your Dad is not feeling well. My husband Phil is on Velcade with Dex and chemo (I can never remember the name of the chemo) and his only side effects have been tiredness sometimes and his hair is thinning, probably from the chemo. Everyone seems to have very different reactions to everything, my husband loves the Dex days as it takes away his pain but other people seem to find it harder. I know this doesn't really help answer your question about Velcade for your Dad but I wanted to let you know I am thinking of you and your Dad and hoping they will find the best drug to help him soon, the Velcade may be it, fingers crossed.

Megan

[meganjaneParticipant]

Hi Tina,

Well done on the stem cell harvest!! My husband Phil had radiotherapy on both of his legs, five sessions over five days. Side effects are obviously different for everyone but Phil felt tired but didn't suffer from any nausea. The tiredness may have had as much with having to travel into the hospital everyday as with the actual radiotherapy!:-) He did struggle a bit with the actual radiotherapy as he needed to lie very still on a hard table for about fifteen/twenty minutes during each session and this hurt his back but paracetamol was able to help with this. Good luck for next week.

Megan

[meganjaneParticipant]

Sarah,

Thank you so much for sharing your good news, for those of us at the start of the journey it is wonderful to read things like this. Enjoy it and long may it continue!!

Megan

[meganjaneParticipant]

Hi Les,

I am also new to the forum. It is my husband who has myeloma and like you it was whirlwind at the start. Phil, my husband, started to have some back and rib pain and then suddenly (it seemed sudden although it was actually a month or two before the diagnosis) he was diagnosed with MM and on treatment. The treatment had to be stopped suddenly after the first cycle of chemo as he needed urgent operations on both of his legs to put nails in to stabilise his femurs. He has now completed his fourth cycle of chemo on the PADIMAC trial at St. Bart's. It was tough at the start but Phil is responding well to the treatment and is feeling much better now, as the others have said there are ups and downs but I have found this forum very helpful, suppotive and informative. It is wonderful to have the support that is offered here and to know that you are not alone. Take it one day at a time but do keep dreaming, we were also worried we would never travel again but reading all the posts on here about where people have been and what they have done has given me hope that we will go on more lovely holidays once things get a bit better.

Megan

[meganjaneParticipant]

Hello,

MM is very different for each person so it is hard to say what it will be like for your relative. My husband, Phil, needed a lot of help at the start when he was diagnosed but he had the added complication of operations on both legs to recover from. Since he has recovered from the operations and has been able to stop using the crutches he has been fine (relatively speaking) and has not needed to much help. Phil was originally using morphine and diazepam to control the pain but that was only for about a month, since he has recovered from his operations he has taken an occasional paracetamol but has not needed too much pain medication.

As I said, it is different for each person. The Doctors will prescribe medication to help with the pain but if you are concerned about how your relative will manage at home I would ask at the hospital about what help may be available.

Megan

[meganjaneParticipant]

Wendy,

Happy Anniversary 🙂

It is lovely to read good news on the site. It helps people like me who are at the start of our MM journey, my husband Phil was diagnosed in May 2012, to stay positive.

Megan

[meganjaneParticipant]

Hi Gill,

My husband Phil was diagnosed in May 2012 and he started receiving Zometa injections every three weeks after he had a dental survey. He is on the PADIMAC trial at St. Bart's but I don't believe we have been told how long he will receive the Zometa injections, I assumed that it would only be as long as he was receiving chemo, I will ask Phil to check next time he goes to Bart's. As far as I know there is no charge. I agree with Ali, it should not matter if you started as a private patient but from reading other posts on the site it seems there is a post code lottery in some cases 🙁

Megan

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