[jillsParticipant]

Hi All,
Good to hear from some of the regulars again. My Mum is currently 9 years on from original diagnosis and starting treatment. She is nearly 87 but still in reasonable health. She has had the full arsenal of treatment and is now just on a low dose of dex and cyclophosphamide. She has always had a high light chain reading – Light Chains currently 21,700 (but no kidney problems amazingly) and PP 52. Other bloods are all OK apart from some anaemia so she had a blood transfusion every now and again. She continues to surprise us all with no bone problems either!
Take care all of you,
Jill

[jillsParticipant]

Hi Helen and Peter,

Glad you found the info on Mum helpful and encouraging. She has done incredibly well and even surprises the doctors.
Mum has had a follow up bone marrow biopsy a couple of years ago but the results were not very useful – she has less than 20% ‘useful’ bone marrow cells but this is not uncommon at the age of 86. It does mean they have to avoid some of the more vigorous treatments like Bendamustine as this would probably polish her off (the doctors words not mine!) Even Mephalan is quite tough on the system so she has to be monitored quite closely and is on quite a low dose. At her age it is about maintaining a good quality of life and preventing problematic symptoms. However, she has never been denied any treatments on the basis of cost – thank goodness for the NHS.

All the best to you both,

Jill

[jillsParticipant]

Helen,

Sorry I should have also said that she had more than 10% myeloma cells in her bone marrow on diagnosis. I don’t think we got a precise number from the consultant.

All the best,

Jill x

[jillsParticipant]

Hi Helen,
Sorry for the delay but no problem with giving you Mum’s numbers. When she was diagnosed in 2007 (age 79) her PP was 39 and light chains 10,000. CTD made them reduce to PP 11 and light chains 1,500, they never got much lower than that but it was enough for a plateau as they stalled for about a year or so with no treatment. Next came Velcade and the light chains only went to 5,000, and after Revlimid the same although she had to stop that due to the impact on her immune system. The PPs were 45 and light chains 17,000 when she started Pomalidomide earlier this year but it didn’t have much of an effect so that was stopped after 3 cycles. She is currently on Mephalan, Prednisolone and PPs are 44, light chains 10,000 after one cycle. Despite the high light chains her kidney function is fine and we are continuing with this treatment, they may add Thalidomide.
So she is a 8 year survivor even at the age of 86 and her readings are not that different from 7 years ago!

Hope this helps,

Jill x

[jillsParticipant]

Hi Peter,

I may be wrong but I thought it was only called true remission if your PP and LC numbers went to zero, otherwise it is called achieving a plateau. My Mum has only ever achieved a plateau where the numbers have reduced and then stabilised so treatment has stopped for a while – her numbers never got to zero. However, the plateaus have been fine as she has felt well during them!

Take care,

Jillx

[jillsParticipant]

Hi,

My Mum had a rash when she start pomalidomide – the hospital gave her Piriton and she took that once a day which seemed to do the trick. Took a day or so to settle down once she started the Piriton so hopefully it will work with your husband, if not as Ellen says get the doctor to consider reducing the dose. Mum continued taking the Piriton all the time she was on pomalidomide – took it at night as it can make you a bit drowsy.

Hope things are improving,

Jill

[jillsParticipant]

Hi Andy,

So pleased to hear you are on the mend, we have all been worrying about you.

Please take it easy and get well soon, there are lots more of those gift days for you to open.

Love, Jillxx

[jillsParticipant]

Vicki,

So sorry to hear the news about Colin, thinking of you and sending love,

Jill x

[jillsParticipant]

Hi,
Just to add to this debate in case it is of interest – my Mum has often suffered with low neutrophils while on treatment, most recently her neutrophils dropped to 0.3 while on Pomalidomide causing her consultant to stop treatment. Within a week of stopping her neutrophil count rose to 0.9 and now a week further on is at 2.4! She is on no treatment at the moment despite PPs of 45 and light chains of 11,000, her platelets are at 320 and Hb 10, she is feeling very well and has no pain! She has had no problems at all with infections and her kidney function is normal.

At the age of 86, having had myeloma for 7 years and the whole range of treatments I think this is all pretty remarkable. We are due to see her consultant in the next few weeks and will see what happens next (if anything).

As we often say it is a very individual disease.

Jill

[jillsParticipant]

Hi Andy,

Just to say that at Mum’s consultation it seems that the pomalidomide is not working for her. The hospital have told me that there is no further suitable treatment for her so they will just monitor her bloods. None of us really know how things will develop but her myeloma numbers are currently PP44 and Light Chains 12,000, without any treatment I am sure these will rise. At the moment she is quite well with no pain even with these numbers so hopefully that will continue for a while.

All the best,
Jill x

[jillsParticipant]

Hi Andy,

Glad to hear you are doing well. Mum also seems to be doing OK on pomalidomide, not much in the way of side effects after 3 cycles and a small reduction in both PPs and Light chains after one cycle – seeing her consultant on Weds this week so will see how they are doing after another cycle.

Take care,

Jillx

[jillsParticipant]

Vicki and Colin,
Many congratulations and love to you both,

Jill x

[jillsParticipant]

Hello,
Similar situation but further down the line for my Mum who was diagnosed at age 77, started treatment when she was 79 and has been on various drug regimes for the last seven years, she is now 86. She was also very independent and has done very well although I now do more for her than I used to as she decided to give up driving. She still lives alone and gets out to a local social club a couple of times a week. She has had CTD (twice), Velcade, Revlimid and is currently doing well on Pomalidomide. At various times she has needed blood transfusions and she has a bone strengthening infusion once a month. Amazingly she has had little in the way of infections or illnesses during the treatment. At 86 I would say that her quality of life remains quite good – hope this is encouraging for others in the same situation. Feel free to ask me anything if I can be helpful.
All the best,
Jill

[jillsParticipant]

Hi Andy,

Just a quick update, Mum has had the first Cycle of Pomalidomide, three days in seemed to develop a bit of a rash but it went after a day or so (hospital gave her some piriton), apart from that she seems OK, just waiting for the blood results to see if she is OK for Cycle 2. Like you I think she finds the worst bit is the dex – but she only has 20mg once a week now.

So fingers crossed it will be doing the trick on the MM.

Cheers,

Jillxx
PS By the way she isn’t taking the extra antibiotic…

[jillsParticipant]

Hard to read your message properly but you have to respect your Mum’s decision as SCT is not an easy process although Carol is right that a year of feeling ill is not the norm. The non SCT treatments for MM are improving every day, my Mum is 86, diagnosed with MM seven years ago and is still working her way through the various treatments (she was too old for SCT).
As to the risk to you I guess the way to look at it is that one in three of us will apparently get some form of cancer, you could spend a lot of time worrying about it rather than living life.
All the best
Jill

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