[juliehParticipant]

Hello everyone
I was wondering if anyone on here has any experience of fourth line treatment for myeloma?

My Mum (who is now 76) was initially diagnosed in 2008 aged 70, and has now relapsed for the third time.

She was initially given CTD and had nearly three years remission, but had awful side effects during that treatment including a pulmonary embolism. Following her first relapse in late 2011 she had Velcade which only gave her a year’s remission and then after second relapse early last year (2013) she had Revlimid, but had to stop that after 4 cycles due to severe side effects and her kidneys began to be affected.

She has only had a few short months remission this time and the myeloma is back with a vengeance.

She’s severely anaemic and is currently in hospital to be built up/have a blood transfusion before they start attacking the myeloma again. They are going to try Velcade again, as this was the drug that my Mum experienced less toxicities with, but on the other hand the effects only lasted a year. I feel very worried about it all. Most people I read about on this forum (and what an admirable fantastic brave bunch you are if you don’t mind me saying) have had SCTs and are only on first/second line treatment, but Mum was never offered an SCT as she was deemed “too old and not fit enough” at diagnosis. Is there anyone out there with a history like my Mum’s – and how did fourth line treatment go?

Thanks in advance, Julie x

• This topic was modified 10 years, 11 months ago by  webteam.

[sanParticipant]

Hello Julie, i know how hard this is for you, it sounds as though Velcade will help push those PP’s back again and i so hope that Mum has some remission again soon and you know a year is good, i am sure that all will be done that can be done for her, sadly my Mum was unable to tolerate Velcade and the RCD trial affected her liver and so she only had a few months remission last summer. I know how worrying this illness can be for you all and quality of life is important now for your Mum, i hope that all goes well for her and that she feels better after her blood transfusion.Do ring one of the lovely myeloma nurses, they will know more about the treatment regime for Mum.Love to you San xx

[juliehParticipant]

Hi San

Thanks for your reply.  I’m not sure why my first post has lots of redundant text in it, so thanks for persevering with it.  Yes, it’s been a tough time with Mum, particularly over the last year or so. You’re right, quality of life is so important and she does not have that at the moment.  I read your other posts regarding your Mum and I was so sorry to see she has passed away recently.  I know that we are lucky that Mum has had 6 years survival so far following diagnosis, but myeloma is a tough cancer and I think others don’t really realise what the whole family is going through (not just once but a few times over….). Thank you again San.

Any other long term survivors out there reading this?

Julie

 

[tomParticipant]

Hi Julie

Sorry to read your mum has been through a lot, it’s a hard illness to find the one that will kick it into touch, I have had the CTD and SCT all in 2009 four years remission then it kicks back in again so am now on Velcade getting ready for my second SCT at the end of this year all being well,

Am sure they will find the one that will work on your mum so I have fingers crossed that it’s soon.

Love to you both

Tom onwards and upwards xxx

[juliehParticipant]

Hi Tom

How kind of you to reply….I’ve read some of your other posts and you always seem so positive.  Good luck with the Velcade and the SCT.

I can’t help but wonder if they had offered my Mum an SCT 6 years ago whether she would have fared better but that is something we will never know I’m afraid. I did question it at the time but her consultant said she did not think my Mum would be a good candidate for a SCT at age 70 (at the time). Her first remission was a good one but the others have not been as good quality and have not lasted as long. At the moment I’m just worried as to whether she will be strong enough to withstand more treatment.  Who knows what the next few weeks will bring – as you say we just have to stay positive.  This all also affects my poor Dad who is also elderly but copes brilliantly with my Mum – he is the main carer as I live 60 miles away from them. All I can do is visit and support as much as I can.

Thanks again Tom and thanks also to the webteam who have edited my first post and removed the unwanted extra text.

Best wishes, Julie x

 

 

[tomParticipant]

Hi Julie
Your more than welcome as am sure it’s difficult for you as well as you Mom and dad, as for looking back it can’t alter things I/we had made decision that wasn’t right but they were right at the time and that’s all that matters we just dust down and move on it’s not easy being a carer it takes its toll,I was a carer for my wife when she got ill in 2008 (she in now all clear and fit as a fiddle now) now Elaine is my carer but av been told by her sister that she has been since 1975 haha.

Give my love and a big cuddle (they always help) to your Mum and Dad.

Love to you all

Tom onwards and upwards xxx

[sanParticipant]

Hi Julie i am thinking of you all, i understand what you are going through and i too wondered if we were embarking on the right treatment and really it was all too much for my Mum and Dad to understand, i knew a little more because i could research it and found this forum so helpful and the myeloma nurses and at least felt that i could ask some questions at clinic which i hoped help along the way and i passed on information to my parents. I wished that it could have turned out differently for Mum and we could have had more time but sadly it was not to be, and now Dad is finding it hard because he did so much for Mum even though she was in a lovely nursing home for the last weeks, he visited everyday as my sister and i did and we spent time caring for her and i know that we could not have done anymore as the illness took its toll, i wish that there was an easy answer to your questions but all that you can do is give Mum and Dad love and support and ask questions re further treatment but also it will be Mum’s decision whether to have more treatment or not with her Consultant, my Mum’s Consultant said that there was no further treatment that she could offer as she was unable to tolerate it all and so transfusions and antibiotics for infections were all that could be done for her and making her comfy with pain control,it is such an individual illness and i know that people can improve with the drugs available and most certainly there are many ups and downs along the way, sending much love to you all and i so hope that all goes well San xxx

[andygParticipant]

Hi Julie.
Sorry to hear your mums struggling. The reason they will be trying Velcade again is because it’s kinder to the kidneys. I’m on my 5th line of treatment and I haven’t had a SCT either not because of my age, I’m 55, or fitness but due to the hammering my bone marrow has taken from all the drugs they have tried on me. The only drug I’ve had any success with up to now has been Revlimid CRD which only stabilised me. Though that was for 22 cycles. I’ve now moved on to Pomalidomide as the CRD was failing. The bad news is with every treatment the bone marrow is damaged and so it’s function is reduced which is not good news for me as I’ve been on full chemo since Oct 2011. The issue of quality of life is a major concern and the balance between treatment and no treatment is a tough call. Maybe a reduced dose given less frequently as a maintenance regime can give your mum the quality of life she wants whilst keeping the myeloma at bay.
Good luck.

Every day is a gift
Enjoy them

Andy xx

[juliehParticipant]

Thank you again Tom and San for your replies. It’s very good to talk with people who have first hand experience of the disease, either as patients or carers; I think the majority of people do not really understand what myeloma is all about and the need for repeat treatments, which I think does single it out from many other cancers that are still gruelling but potentially more “cureable”. San – your Mum was lucky to have such a loving and caring family…it is obvious you all really did your best for her and it must have been very difficult to watch, as I am only too well aware.

Andy – I feel humbled by your post and your other posts on the forum. It seems that you have been through such a lot over the last few years and I am sorry that you have had to have various chemos over such a relatively long period of time. I hope you soon get a good remission. Mum has started the Velcade/Dex now on a weekly schedule, (with breaks in between cycles) – so we will see how things go over the next few weeks and months. Thank you for responding.

Take care

Julie

[eveParticipant]

Hi Julie

My husband is on fourth line treatment CDV. It’s exactly 3 years since he was diagnosed,I often wonder if he had not had a SCT would he have had a longer remission!!!!!

So I suppose we all do what ifs,hindsight is a wonderful thing,just wish I had the gift.

The problem is often the type of Myeloma and how aggressive it is,plus the fact that the Cancer evolves with the treatment,which can cause other problems,even the experts cannot predict how long a person will live.

When you get into the realms of fourth line treatment ,you know you are just buying time,but they have learnt a lot from trials,and just may be because of that new treatments might come on line that will buy more time,this is the only thing you can hope for.

So forget about will it or won,t it buy more time,just enjoy this extra time you now have.Eve

[jillsParticipant]

Hi Julie,

My Mum is rather like yours in that she was diagnosed about 7 years ago (when she was 78) and has had three rounds of treatment – CTD which gave her around 3 years remission, followed by Velcade which was only a couple of months remission and then Revlimid which did not suit her and did not work very well either – she got anaemic and had to have a few blood transfusions and also had a very low blood count. Mum is now 84 and has been off treatment since August last year with just six weekly monitoring. The fourth type of treatment would be Benadmustine and her consultant decided that would probably do her more harm than good so he decided we would watch and wait. I can honestly say that she is better at the moment in terms of health than I have seen her for the last 6 years, a little frailer of course at her age but much more cheerful and livelier, I think she was depressed during treatment as well as feeling rough. Her consultant says we may have to start some treatment again soon as her MM numbers are increasing but he will only give her a low level of maintenance drug as he wants her to keep the quality of life while controlling the symptoms – an approach I completely agree with and so does she.
So there are other approaches that can be taken rather than yet another different drug – and it sounds like it might be Velcade but there are also different combinations of CTD type drugs which might work as they did earlier.
All the best,
Jill

[juliehParticipant]

Hello again

Eve – I know what you mean about enjoying every day but my Mum has been too ill to enjoy life at all over the last few weeks. I wish your hubby well with his CDV and I hope he is doing well on the treatment.

Jill -thanks for sharing about your Mum’s journey which sounds similar to my Mums. It’s ironic isn’t it that without the treatment the quality of life is better…… but then the myeloma rears it’s ugly head again. I guess fourth line treatment approaches are quite individualised then. I think the fact that my Mum had a pulmonary embolism during CDT the first time has put them off trying that again.  In a way I’m quite relieved she is on Velcade as at least she goes in to hospital for that and so they can see how she is and monitor her general wellbeing more regularly than with the oral treatment.  She’s on a once weekly regime so I’m hoping that she won’t have too many side effects. Also she is being given the Velcade subcutaneously (SC) this time (it has changed from when she last had it – intravenously) – and the myeloma nurse told her that sometimes less side effects are experienced with the SC dose.

So – we keep our fingers crossed and watch and wait. All the best to you and your Mum x

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