I am very sad to read this, Gill was incredibly welcoming when I joined the forum and her stories about the dogs and the trips to France where always delightful. My condolences to you, your brother and the rest of Gill’s family and friends.

Megan

My thoughts are with you and your family.

Megan

My husband Phil is on the Pollux trial at Bart’s, he was randomised to the Daratumumab/Rev/Dex arm of the trial. Phil has just finished his second cycle. Things did not start well as he had a reaction to the first infusion of Daratumumab – a bronchospasm that resulted in difficulty breathing and also a rash. He had to stay the night…[Read more]

So glad to hear you managed to pop over the France. Hopefully now you have a plan and know what is happening (or at least what the options are until your hear the result of the randomisation) you will feel a bit better, the limbo of not knowing what is coming next can be very daunting.

Phil has only ever had light chains mentioned a…[Read more]

I try and focus on the fact the myeloma is so individual so even if the first remission is not the 4 to 5 years maybe the second one will be, it is a case of finding the drug that works best for the individual. Phil had velcade as his first treatment (on a clinical trial) and although it worked it has left him with peripheral…[Read more]

Sorry to hear your pp numbers are rising. It is a shock when you get the news, we felt the same when we found out my husband Phil was relapsing – we also wanted 4 or 5 years remission after the SCT. Phil actually only had one month of complete remission but his pp numbers rose very slowly. Phil started treatment again last week just…[Read more]

I looked into this for Phil (although he hasn’t done it yet) and I found a Multiple Sceloris group near us that has one. From what I remember it was not too expensive and anyone could use it. It might be worth checking if there is a MS group in your area.

Megan

I have not been posting much as we are still watching and waiting but Phil’s relapse has now been happening since August 2013 and new treatment is now imminent. PP up to 10 but fatigue is getting worse and bone pain is increasing

I have not been posting much as we are still watching and waiting but Phil’s relapse has now been happening since August 2013 and new treatment is now impenitent. PP up to 10 but fatigue is getting worse and bone pain is increasing

Tom is doing well, onwards and upwards is his saying and I am sure he will pop in with an update at some point.

Megan

I am so glad to read that the lower dose is more manageable and that you are feeling more positive. I hope the side effects continue to diminish as you start cycle four.

Megan

You and Ian are in my thoughts. I hope you do not have to wait too much longer for the results and when you do get them, if a change of treatment is needed, I hope you find a way forward that works for Ian. A second opinion is a good idea even if it is just to hear another viewpoint.

Megan

That is wonderful news.

Megan

Great news about the pp drop. My husband Phil has his zometa infusion over 20 minutes instead of 15 as we read somewhere (it may have been on this forum) that the side effects of zometa are reduced if the infusion is done more slowly. Phil just asks the nurse each month to do this and they set the drip accordingly. Phil has been on…[Read more]

That is interesting, I am not sure if my husband Phil’s vitamin D levels are still being tested but that was what lead to his initial diagnosis. He was diagnosed with low vitamin D levels and it was only when those levels did not improve and the pain (that we now know was bone damage) got worse that further tests were done and MM was…[Read more]

Everyone is different on their MM journey but the 100 day assessment is not necessarily the best response you will get from your SCT. My husband Phil was diagnosed with a PP level of 32. After 6 cycles of velcade-dex-dox on the PADIMAC trial his pp was down to 5. At the 100 day assessment after a SCT they had dropped to 3. They…[Read more]

It is such good news, Phil and I are both so happy for you. Long may it continue.

Megan

Thinking of you xxx

Megan

Enjoy the dex free nights, best wishes for a speedy recovery from the op and fingers crossed for the blood results at the end of August. You had such an amazing response to the Rev that I am sure if there is a tiny blip after a month off it will soon be reversed when you start the rev again.

Do you mind me asking how your neuropathy…[Read more]

Fingers crossed it will be a slow relapse. It is hard to stop worrying but you just have to take it a day at a time. It is a good sign that Colin is feeling well and that the blood results are good. We found out in December that Phil’s pp had been rising for five months and we were sure he would be on treatment by February. Here it…[Read more]

I was unable to attend my husband Phil’s last appointment with the consultant and Phil asked if the doctor would mind if he taped the converstaion as normally with both of us there one of us will remember what the other one forgets. The doctor did not mind at all so it may be worth asking. Phil used a device on his phone to record the…[Read more]

Megan

Sorry to hear this news and I hope the next appointment in 6 weeks brings better news. It is hard to come to terms with the numbers going up when you spent so long waiting for them to go down :-(.

I know from what I have read that light chains are more volatile than pp numbers and they can go up and down depending on infections and…[Read more]

That is wonderful news, long may the excellent remission continue 🙂

Thank you for sharing as it gives me hope that Phil’s next line of treatment may give him this type of result.

Good luck on the 7th.

Megan

I can’t help too much as my husband Phil’s MM is monitored by paraproteins but two months ago his Lambda Light Chains went up to 13.9 which threw the ratio out of normal range. I know these are tiny values but his consultant said it was probably just a blip as Phil actually has Kappa Light Chain Myeloma (although after the first…[Read more]

Welcome to the forum, sorry you have had to join us, especially with such a complicated diagnosis. I know from experience of my husband Phil’s diagnosis of MM how complicated it can be to explain to people so I can only imagine the difficulties you have explaining LCDD.

My husband was diagnosed at the age of 43 and had his SCT at…[Read more]

I am glad to hear the DT Pace went smoothly but so sorry to hear M’s temperature spiked and he had to be admitted again. It sounds very scary and I do know what you mean about the parking. When Phil’s temperature spiked we got a cab to the hospital and I think the cab driver was terrified when he realised how unwell Phil was so he…[Read more]

Good luck to you and Alex for your run and thank you for helping to raise money for Myeloma UK. I hope the bone marrow biopsy on Tuesday brings good news.

Megan

Megan

I hope you are both enjoying the long weekend and that the DTPACE helps get the Myeloma down to a level that will allow M to have the SCT.

Megan

Sorry to read about your relapse, I hope the next treatment has few side effects, works well and gives you a longer remission.

Megan

I can’t really help with most of your questions as my husband Phil was diagnosed with Myeloma not MGUS or SM. Phil has bone pain from the damage caused by Myeloma and this has not gone away completely after treatment so he has ongoing pain but one of the things the doctors are tracking to help decide when treatment is needed again is…[Read more]

It is my husband Phil who has Myeloma and he also has trouble getting a full nights sleep due to the neuropathy he has in his feet from the Velcade he had as his initial treatment. He finds wearing socks to bed helps a bit. Also massaging the feet and legs with cocoa butter can help.

It may also be that your body is still recovering…[Read more]

This is my test post from my blackberry.

Thanks,
Megan

I agree with Rebecca, my understanding is VGPR is measured from diagnosis. My husband Phil took part in the PADIMAC trial which was looking at delaying the SCT if a VGPR (90% reduction) was achieved after treatment of velcade-dox-dex. In Phil’s case his pp was 32 at diagnosis and was down to 5 after the stem cell harvest, as this was…[Read more]

David – thank you for asking this question and thank you to Rebecca and Helen for your helpful replies.

Phil is slowly relapsing for the first time and at his clinic appointment today light chains were mentioned for the first time ever. Since his diagnosis we have only ever been told about the PP numbers. I knew I had read this thread…[Read more]

Congratulations of your great results at day 42 🙂

As with everything MM related it seems to depend on the individual hospitals and doctors. My husband Phil has Zometa and he never stopped having it. The day he was admitted for his SCT he had his monthly Zometa and this has carried on monthly with no break since his SCT which was…[Read more]

We had a shock in December when we found out Phil’s PP had been rising since August but we are getting used(?) to it now. We were told in July 2013 it was at zero and we had just assumed it was still there but it turns out Phil only maintained the zero for one month! At the moment he is still on a watch and wait plan, he has a…[Read more]

Welcome to the forum, I am glad to read that you are recovering well from your SCT. My husband Phil was diagnosed with MM at the age of 43 in May 2012. His first line of treatment was on the PADIMAC trial which was to see if the use of Velcade could delay the need for a SCT. In Phil’s case his response to Velcade was not good enough…[Read more]

Welcome to the site but sorry you have had to join us. The positive thing is you are being monitored and your doctors will being keeping an eye on your blood results and any new symptoms, make sure you tell them about the pain in your sternum.

How to avoid ulcers from the worry is something I am still trying to work out myself :-).…[Read more]

Welcome to you and Kevin. My husband Phil was on the PADIMAC trial at Bart’s. His paraprotein did not reduce enough to delay the SCT so he had his transplant after he completed the six cycles of the dex-dox-Velcade. The trial was looking at delaying the SCT if the initial treatment decreased the pp or light chains by 90%. I know of…[Read more]

Megan

One last suggestion after reading your response. I know it is not available everywhere but have you checked if M could have patient transport? When Phil had both femurs operated on he could not travel on public transport and driving to the hospital was not an option. Phil was able to get patient transport to and from his…[Read more]

It is a difficult balancing act but you are right not to rush into any decisions. Do you have people who live near by who can help? The reason I ask is that M may need a lot of help at the moment but as the treatment gets the Myeloma under control he may be able to do more without your help. If there are family or friends who can…[Read more]

Well done Steph for catching it quick. Hopefully your pomalidomide will not be delayed for too long, will they wait until your neutrophils recover a bit more before starting it again?

Phil is battling a bug at the moment as well, he has been given penicillin and his temperature has been behaving itself so no need for a hospital stay…[Read more]

Sorry to hear Charlie collapsed, I hope the chest infection is on the way out by now.

We live in London so I can’t offer any help on your choice of hospital but I hope the move into the new house goes smoothly.

Megan

I am so sorry to read this sad news. Phil and I are thinking of you and your family.

Megan

Nothing seems to help Phil’s neuropathy but it is mostly just annoying, not painful too often luckily. Hopefully you can avoid it but if it does start get them to prescribe you something to help as soon as possible, I think if it can be controlled/stopped early on it is more likely to go away. If you need/want any info in the future…[Read more]

When my husband Phil had his Melphalan he chewed on ice chips before and during the chemo. We got the ice from the ice machine in the ward kitchen. Phil also used the mouth wash provided during his stay in hospital and when he got home. He had no mouth ulcers.

Good luck and keep us posted.

Megan