[meganjaneParticipant]

Hi Ali,

Phil is due to have his cells harvested on December 5th and will then go into St Bart's in London on December 17th for the transplant. Not quite the Christmas we would normally have but MM has never seemed too concerned with our plans:-D

Our view is get it done and dusted and then bring on the New Year and start fresh. Here's to 2013 🙂

Megan

[meganjaneParticipant]

Hi Chris,

I am so glad to hear that you are doing so well, even drinking beer:-) I wanted to thank you for sharing your transplant journey as my husband Phil will be embarking on his own stem cell transplant in a month and it has helped us to prepare reading your posts. Phil may not be able to beat Tom's 16 days in hospital (he will try though) but he will be more than happy if he is drinking beer when he gets home 😀

Megan

[meganjaneParticipant]

Hi Vicki and Colin,

I am glad to hear that Colin is on the mend and that the pain is under control, fingers crossed for an end of the week release from hospital.

Phil, my husband, is due to go in for his stem cell transplant mid December so I have been following your progress and Chris' as well trying to pick up as many tips as I can. Thank you both, Vicki and Chris, for posting and sharing your journey with us all.

Megan

[meganjaneParticipant]

Hi Ali,

That is wonderful news about your Mom, a great way to end what has been a long and tough year for you all. My husband Phil will be having his stem cell transplant just in time for Christmas but we are looking forward to a better year in 2013:-)

Megan

[meganjaneParticipant]

Hello Carol,

So sorry to hear that your MM has made an unwelcome return. My husband Phil has just finished PAD as his initial treatment on the PADIMAC trial which is trying to see if using Velcade upfront could delay the need for a SCT. I am not sure if this PAD would be the same dosage as yours but Phil had six cycles and he did not have too many side effects. He only felt queasy for a few days during cycle six and he has suffered some peripheral neuropathy in his feet from the Velcade. Phil has described it as his feet always feeling cold even when they are not. The consultant reduced the last two doses of Velcade to avoid the neuropathy getting any worse.

Good luck with PAD, I hope it gets the MM under control quickly.

Megan

[meganjaneParticipant]

Hello Stewart,

I am sorry you have joined us on this forum but it is a great place to get advice. My husband Phil and I are quite new to Myeloma as he was diagnosed in May this year at the age of 43 so we are still learning everything as well, it is very confusing! I don't think the actual level of paraprotein in itself is a problem, Phil was diagnosed with a level of 32 but he also had lytic lesions on the bones and bone pain. I know of some people who have been diagnosed with higher levels but have no other symptoms. I think the paraprotein is just one part of the diagnosis and it can drop quite quickly with the treatment. If you post your question again on the Newcomers forum I am sure more people will be able to advise you, not everyone reads the under 50s forum as you are a select group.

I can imagine how hard it must be for your wife with a new baby and a new illness to deal with. It has taken me time to get used to Phil's diagnosis as we had never even heard of Myeloma. Things do get better and places like this forum are very helpful. If you or your wife have any general questions or just need to talk to someone I have found the nurses on the Myeloma Infoline very knowledgeable and friendly. The number for the infoline is at the top of every page on this website.

Megan

[meganjaneParticipant]

Hello Kerry,

I am sorry to hear that Melvin had to go to the hospital again but that is very good news about the drop in pp levels.

My husband Phil has been admitted to hospital three times since his diagnosis in May, two of these times were unexpected. The first time he had gone in for his chemo as normal and they would not let him go home as they were worried his leg could shatter at any moment due to the lytic lesions. Strangely (due to bed shortages I think) they let him out two days later but looking back that may not have been wise as he was in so much pain he couldn't climb our stairs at home and had to crawl up them. I was so scared he would hurt himself more! Five days later he was back in hospital for the planned operations on both of his legs.

The third stay in hospital was after he had a temperature of 40 for three days. We were still new to MM when this happened and had not yet read the wise advice from people like Dai on this forum. We now know that you can not wait for a temperature to pass on its own. Phil was hooked up with super strength anti biotics and able to come home a day later.

I think hospital stays, especially at the beginning while all the problems caused by MM are found and fixed, are normal. The thing to remember and what I keep telling myself, is that the doctors and nurses can help and as much as I don't want Phil to stay in hospital it is often the best place he can be so he can get the help he needs.

Best wishes to you and Melvin.

Megan

[meganjaneParticipant]

Hi Keith,

I am afraid I can't offer any suggestions/opinions as my husband Phil is just at the start of his MM journey and he has only had one infection so far that resulted in a hospital stay and he has not needed any extra platelets yet. I just wanted you to know that my thoughts are with you and I hope you find a solution with your consultant.

Megan

[meganjaneParticipant]

Well done Mavis, that is wonderful news!

Megan

[meganjaneParticipant]

Trish and Peter,

That is wonderful news, thank you for sharing and enjoy your well deserved holiday. It does give me hope that holidays may happen again one day, it is all so scary at the beginning…

Megan

[meganjaneParticipant]

Hi Gill and Dave,

I am so sorry you have had to join us but you have come to the right place, this forum is very helpful and informative. My husband Phil was diagnosed with MM in May this year at the age of 43. There is a lot to take in and it all feels like an out of control roller coaster at the start but it does get easier. Phil has just finished 6 cycles of dex-dox-velcade and we are now getting ready for Phil's stem cell harvest at the end of the month. During the last cycle Phil started to experience the cold heavy feet problem. His last two doses of velcade were reduced but his poor feet are still cold. I posted a query about this under the Side Effects forum entitled Velcade and Cold Feet if you would like to read the responses. The general consensus was it is an annoying side effect. Phil is also feeling very tired so I try and encourage him to nap as much as possible. I think if your body is asking for sleep you need to sleep.

I know what you mean about feeling useless but just keep doing what you are doing. Please ask any questions you have as I have found everyone on this forum very helpful and someone is bound to have an answer.

Megan

[meganjaneParticipant]

Hi Vicki and Colin,

I hope everything goes to plan tomorrow and that there is a bed for Colin! I have followed your thread since I first joined the site and I am happy that you have overcome all the hurdles to get to this point. Good luck for tomorrow.

Megan

[meganjaneParticipant]

Phil's last two doses of Velcade were reduced and his feet have not gotten any worse so hopefully the PN will fade over time. As Phil is on the PADIMAC trial he did receive it subcut but I am not sure how high the dosage was. Saturday was his last day of his induction treatment so he now has ten days off and then it is back to the clinic to find out about the stem cell harvest. Onwards and Upwards as Tom would say 🙂

Megan

PS – I have tried to warm my hands up on Phil for years but for some reason he has never thought it was a good idea:-D

[meganjaneParticipant]

Hello Amanda and Bob,

My name is Megan and it is my husband Phil who has Myeloma, he was diagnosed in May this year. I see from your other post that you live in Cannock, we live in London but Phil was born in Walsall and still has family in the area. We were married in Lichfield. I have found this forum very helpful and everyone is very kind. Maggie and Ellen the Myeloma nurses whose number is on this site have also been great when I have called with questions, there is so much to learn and take in.

Megan

[meganjaneParticipant]

Hello Kerry,

You have had such a lot to deal with, it is not surprising you are worrying about everything. It does seem to happen like a whirlwind with no time to take it all in. I am 38 and my husband Phil was diagnosed in May this year at the age of 43. Since the end of May he has had two operations on his legs as well as the chemo treatment and there has been so much to learn as neither of us had ever heard of Myeloma before.

I have found this forum a great support and I hope you do to. Best wishes to you and Melvin.

Megan

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