[meganjaneParticipant]

Hi Donna,

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

[meganjaneParticipant]

Dearest Vicki,

My thoughts are with you and your family.

Megan

[meganjaneParticipant]

Hi David,

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 in hospital for observation but he was told that it is common to have a reaction to the first Daratumumab as the body reacts to the monoclonal antibodies. Phil has not had any further reactions to it. The main side effect Phil has is tiredness, we are not sure which drug is causing this (maybe the Rev?) or if it is due to having to travel into the hospital twice a week, one day for blood tests and then the next day for treatment. Starting on cycle 3 the Daratumumab is once every two weeks instead of weekly so he will see if this helps with the tiredness.

The results from the first cycle were amazing, Phil’s paraproteins dropped by 60% from 15 to 6, we will find out the results of the 2nd cycle next week.

This is Phil’s 2nd line of treatment. He was diagnosed in May 2012 and had velcade/dox/dex and then a SCT over Christmas 2012.

Megan

[meganjaneParticipant]

Hi Karen,

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 few times, he seems to have had them briefly when he was first diagnosed but they were back to normal after one cycle of treatment, we only found out a year later about them and his light chain ratio was out of range again this year just before treatment but again, the first cycle has put it back to normal. His myeloma is measured by pp and bone damage (lytic lesions).

Keep us posted Karen, I hope the radiotherapy helps with the pain.

Megan

[meganjaneParticipant]

Hi Vicki and Karen,

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 neuropathy so he will not have it again. This time he is on another clinical trial so the treatment is Rev, Dex and the monoclonal antibody Daratumumab. He is taking the Rev daily for 21 days in a 28 day cycle but he had a bad reaction to the Daratumumab the first time he had it last week and now he has a chest infection so this weeks infusion has been cancelled.

Karen – have you recovered from the shingles? I do hope you have good news on the 19th but we understand how hard it is between each appointment waiting for the next set of results.

Vicki – I hope Colin has good success with the Bendamustine and that the side effects are not too bad.

Megan

[meganjaneParticipant]

Hi Karen,

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 over two years after his transplant.

I hope the MRI results are positive for you, for Phil the MRI revealed he had no new bone damage which was good to know.

Good luck on the 19th, we found that the pp number alone did not dictate when treatment started again, the other blood results were looked at and how Phil was feeling.

Megan

[meganjaneParticipant]

Hi Maureen,

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

[meganjaneParticipant]

Hi Vicki,

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

• This reply was modified 9 years, 5 months ago by  meganjane.

[meganjaneParticipant]

Hi Sue,

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

[meganjaneParticipant]

Hi Sharron,

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

[meganjaneParticipant]

Hi Maureen,

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

[meganjaneParticipant]

Hi Maureen,

That is wonderful news.

Megan

[meganjaneParticipant]

Hi Susie,

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 monthly zometa for over two years now and has never had any problems with it. The possible side effects are flu like symptoms. This is not a long term side effect just a day or two after the zometa and not everyone experiences it.

Megan

[meganjaneParticipant]

Hi Rebecca,

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 found. Phil is on Adcal with Zomtea (bone strengthener) and I know the calcium levels are monitored but I am not sure about the vitamin D.

Megan

[meganjaneParticipant]

Hello,

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 continued to go down though and 7 months after the transplant the pp level reached 0. It is now 21 months post SCT and although Phil’s pp levels are rising he is feeling pretty good most days and there is no need yet for more treatment other than the monthly zometa.

I think it is quite common to feel down after the SCT, it is so hard to know without a crystal ball if maintenance would be the right choice. For my husband he is enjoying the time without having to take medication.

Megan

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