[VickiParticipant]

What a difference it makes. We saw the specialist nurse today, Colin has started cycle two. She was amazing, positive, practical, informative, discussing options with out minimising what is at stake. We felt like two different people coming out of the appointment today. It gave us both renewed positivity and willingness to look to the future. Obviously we hope to see the light chain numbers reduce, godwilling, but the nurse was so easy to talk to, she gave us confidence. So different to the other day.

Back on positive mode

Vicki and Colin x

[VickiParticipant]

Yes absolutely endorse what carol,was saying, drink plenty of water and other drinks to keep the kidneys flushed. The light chains can cause problems with the kidneys so it’s importsnt to drink lots.

Vicki and Colin x

[VickiParticipant]

Hi jells,

Yes I would endorse what any says, it’s much better to disclose and being totallyopen means there is no room for argument or ambiguity,

Vicki and Colin x

[VickiParticipant]

Hi Karen

Just catching up and wondering how things are going? Does your get measured by pp only or do you have light chains as well?

Thanks

Vicki

[VickiParticipant]

Hello Anthony

Not had any experience of the pp shooting up but Colin has had revlimid and it was very effective for him. So good luck with that. It’s such an individual condition isn’t it!,

Best of luck

Vicki and Colin x

[VickiParticipant]

Hi jacqui

I will private message you…..colin isn’t happy I posted this as he thinks they will be cross and his treatment might be affected. I mentioned no names but it was a very difficult day yesterday. I reckon jeff must be doing ok if they are pressing on to the third cycle. Must be working! That’s good. The weird thing is that Colin has no pp detectable. It’s only light chains. Is jeff very tired. Colin is tired for most of the time. We don’t know whether it’s myeloma getting a grip (he is so tired and it’s notmgood to see), or whether it’s the treatment,

Apparently they only send the light chain checks off in batches so we don’t know exactly when they are coming back. I’m worried as Colin’s platelets are 75. Don’t know how low they can go before it becomes a problem. This just seems to be a total nightmare.

Hoping things are working out better for you and jeff!

Vicki x

[VickiParticipant]

Hi all

I see that you’ve all tried a variety of treatments. Did fatigue figure a large part of your daily lives. Colin is on treatment at the moment and had only the first cycle but what we don’t know is whether it’s the mm that is causing the tiredness or the treatment….. Colin was bemoaning the fact that he get so tired after doing anything, this fatigue seems much worse than any other time he has been on treatment.

I’d be interested to hear your experience.

Thanks

Vicki x

[VickiParticipant]

Hi Maureen

Colin had 750 light chains when he had SCT and got to full remission. It is possible. It’s just important to remember that each person is different. Ian has come along way andnthismis the big chance 🙂 it was lovely to see the post from the lady who has had mm since 1996. What wonderful encouragement.

Wishing you all the best

Vicki and colin x

[VickiParticipant]

Best of luck Andrea!

The ice pops is a really good tip! Also plenty of soft food. Plenty to drink if you can.

Vicki and Colin x

[VickiParticipant]

Hi there

Colin gas just had the first cycle of bendamustine. It certainly has hit him hard, so if feeling rough is anything to go by he should be in remission again! The positive is they only give it to him for two consecutive days once a month with prednisilone steroids, so less trips to the hospital. The bed bits are that he has been rough all together.

What other treatments has your husband has? How is he in himself?

Vicki and Colin x

[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

[VickiParticipant]

Hi there,

Yes don’t do anything too rash. Wait and see what the consultants say.,as long as your husband is able to care for himself then try to keep things as normal as you can for as long as you can 🙂

Vickimand colin

[VickiParticipant]

Hi Jean

How are you. How’s frank doing?. Velcade didn’t work for Colin so he’s just had a first cycle of bendamustine. It’s hit him really hard. First cycle so no results yet. It’s the first day today he’s felt better today and he had treatment 26th JanuRy !

Hope you are both ok
Vicki and Colin xx

[VickiParticipant]

You both sound like you had a good time, keep taking advantage of the opportunities especially when you are feeling well.

Vicki and colin

[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

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