[VickiParticipant]

Hi all

Helen firstly so glad you were able to enjoy the wedding. A great day! We haven’t had a clinic since Colin was given this first lot of bendamustine. We are due on 24th February I think. It’s been a hard week. Since I last posted Colin has continued to be very poorly which ended up with a hospital visit (unplanned) last Monday. Even the nurse said he looked battered! Anyway a thorough check over and an SCG due to pain in the chest all revealed nothing, including the bloods being ok which was good. He has got an inflammation in the veins they ran the chemo through so he’s got to have a pic line in, which he’s bot happy about or looking forward too, but no choice as both arms have the inflammation.

The good news though is today he looks and feels better, and is talking about going to work tomorrow, we shall see. No results yet either. It keeping everything crossed. This is nothing like velcade, you’d hardly have known he was on that- this is clearly a different story!

Helen have you had a number of treatments? When you say refractory what does that mean? I assume from the other posts I e read you aren’t going for another SCT? Or is that an option if they find your cells!

Hope you are ok Andy!

Vicki and Colin x

[HelenParticipant]

Hi Vikki
Hope colin has a better couple of weeks from now, I’ve been on Revlimid and relapsed on it, then Velcade which gave me about 3 months before the numbers started rising again, then I had high dose steroids alone which did nothing at all, now I’m on Pomalidomide.
Apparently it’s not uncommon to be quite sensitive to the drugs but to get little or no length of remission afterwards. Refractory means the drug has stopped working or didn’t work for very long before the disease came back.
They have suggested I have a second transplant and are looking for a donor as none of my sisters were a match. They are looking for my spare auto cells, for some reason they think I only had one set! They also think that my bone marrow is not producing enough cells to even attempt a second harvest! All sounds a bit grim really!
Love Helen

[VickiParticipant]

Helen,

Thanks for the info. I hope they find your cells, that would be better than the donors transplant wouldn’t it? I assume the donor one has more issues due to the graft v host, I think I read that? Colin is still rough. He said his arms and legs feel weak. He has no energy at all. I’m worried sick. I don’t know whether it’s the treatment that’s making him Ill or the myeloma. I would have thought by now in the cycle he would have felt better. He had it on 26th and 27th January, and starts the next lot supposedly 26th feb.

It’s so hard to know what to do, if I had my way he’d be up the hospital but his temperature isn’t up. My ability to focus on the positive isn’t great! That said though I feel weak ant be able to be more supportive on here.at the moment though it all feels a struggle.

Have you lost height helen? Colin’s seems more concerned about that!

Colin said his muscles feel weak. Is that a symptom of spinal compression? I don’t know what to worry about first!

When will you know what your options are helen?

What do you feel like in a daily basis. Just looking for some yardstick

All the best

Vicki and Colin x

[HelenParticipant]

Hi Vikki
It must be very difficult to just watch and not be in control, I was so well in myself last October that when I had to restart treatment as it was so seriously worsening, I was quite shocked. Now I’m on treatment, I feel terrible, but my bloods are looking better! So it’s possible for Colin to feel bad from either cause really. If he’s on large doses of Dex as well then it’s very easy to feel muscle weakness and lacking energy. Has he had spinal compression before?
I’ve not had any loss of height… I have no obvious bone lesions at all… Just generalised pain in my back shoulders and hips…. I seem to have the ‘anaemia first’ sort of disease! I suppose this makes me ‘lucky’ in that I’m not as disabled by myeloma as some!
However, my disease was progressing and if I have an Allo transplant, there is a possibility that it could give me several more years, the graft versus host/tumour can be effective in controlling the myeloma and some people get many years from a successful allograft, always supposing there is a very good match out there! I think another auto transplant is also possible if they find the cells and there isn’t anything else they can offer me! I won’t find out for a couple of months if there is a match so can’t really think about it until then.
On a daily basis I’m afraid I’m a bad tempered shrew to live with (and my saintly husband probably needs a medal) I don’t ever feel ‘well’ but I don’t look ill at all …so I tend to try to continue life as before, it is frustrating, tedious and emotionally draining, especially when everyone around you is doing what they like! I find I can spend a couple of hours a day at full speed, then it tails off! I have to rest for a while then I’m good to go for another couple of hours. Now that I have retired life is very different and I do have trouble finding enough to keep me busy! But I think I was finding work difficult for the last few months..

Don’t know if this helps!
Love Helen

[VickiParticipant]

Hi helen,

Thanks for the information. It was helpful. By the way Colin has no pp detectable. He just has light chains only. We have bt had any results from cycle 1 yet. What we do know I’d that bendamustine is like being hit with a sledgehammer, even with the steroids he has slept for most of today. We are told that’s normal. Just hoping that it will boot this into touch, we have had a really good meeting with the specialist nurse, very encouraging and talked about lots of options if this bendamustine works, here’s hoping. I think it really makes a difference if you speak to someon who is positive. Hope you are feeling ok?

Vicki and Colin x

[HelenParticipant]

Hi Vikki
I’m ok, been ‘off’ the drugs this last few days, and it’s been rough but I’m close to normal again today, hopefully it just continues to work… what options did the specialist nurse talk about for Colin? Or was she just generalising?
You are right about positive attitudes, it does keep you going.
Love Helen

[petesilverParticipant]

due to the changes in the way myeloma works it has stopped showing up in paraprotin and has now started showing

osseous growing  outside the bones in the chest area……so my next treatment is bendamustine which started last week so just hoping it works………..the only way to find out is another ct scan in a couple of months.

other problem is the MM had attacked my spine again L1 and my back is very painful and having to wear morphine patches to dull the pain while I wait for some RT later can’t do Chemo/RT at the same time?

[finnParticipant]

Hi Peter

Nearly missed your post as it is hidden among the others. I am so sorry to hear that your myeloma cells have changed and seem more unpredictable. Really hoping that the treatment works well for you. Have you tried all the other available drugs? All the best

[petesilverParticipant]

Hell Finn

Early days yet just had first cycle of Bendamustine, other problem is back pain using all sorts of pain killers but only helping a little think I will have to take it up on Tuesday with consultant On Tuesday.

Other drugs used so far Velcade, Revlimid, both have worked and given periods of remission but second time around were not being effective. As for what other drugs are available I am not sure he did mention some but can’t remember.

Problem now is mm not showing in paraprotine I don’t know where I am

Peter

 

 

[petesilverParticipant]

Now into cycle 2 of bendamustine, but early days yet, don’t think they check it on until later to see if its working.

Side effects a bit weird tired, bit of nausea, but the biggest problem is the pain in my back  for which I seem to be taking a lot of morphine but in general I’m doing reasonable ( well must be every time I see one friends they always say my! don’t you look well) LOL, but we must look positive

Pete

• This reply was modified 9 years, 8 months ago by  petesilver.

[TinaParticipant]

Hi,

My late husband Pat did very well on Bendamustine in 2010 for over a year with very little side effects. Unfortunately he was a long way down the treatment road before he started it, who knows, it could have worked for longer if he had started earlier.

Good Luck

Tina

[VickiParticipant]

Hi all

Update on Colin’s bendamustine treatment. It’s not working! After cycle 3 his light chains have gone down from 7000 to 6500, so given the toxins they had expected a better response. So Velcade not worked, bendamustine not working. So he’s off that treatment.

What next, no treatment for a month or more due to bone marrow taking a hammering and bloods not recovered properly. Plan c is two options, at least there are some! One is take revlimid and dex until it stops working or two big whacks of melphalan over two months to see if it will knock it down; they said enough to whack the bone marrow down, nearly like a transplant but not quite as he has no stem cells to put back in, unlikely option of a second transplant due to bone marrow issues……it’s pretty hard going. The consultants said it wasn’t a bad day and I suppose it could be worse, the light chains could have gone up again. Big worry

Vicki

[HelenParticipant]

Hi Vikki
It’s all a worry for you, I’m just hoping the revlimid does the trick- I’ve had to have a few months of gcsf to keep my bone marrow up – it seem to have worked and my bloods are low but ok still – I will keep my fingers crossed that Colin has a similar result
Love Helen

[finnParticipant]

Hi Vicky

So sorry to hear that bendamustine did not work for your husband. I am a bit puzzled why his doctors are thinking of using Mephalan, as it works the same way as bendamustine (see “Bendamustine and Mephalan kill myeloma cells similarly through reactive oxygen species production and activation of the p53 pathway and do not overcome resistance to each other”, Leukemia and Lymphoma 2014.). Revlimid and Dex sounds a much better option as it works differently. All the best

[dickbParticipant]

Sorry to hear about your dilemma, At least they are still talking of options and who knows, Colin may be invited to take part in some new trial or treatment. We just don’t know what’s around the corner. Although I have found the doctors here very good at putting a positive spin on everything, I also found them to be realistic. Your consultants view that it wasn’t a bad day probably is based on experience with other MM patients.

Colin’s still going and that initeslf is cause for optimism.

[Author]

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