[keithmtParticipant]

Great news Rosie, that’s made my day.

Keith x

[keithmtParticipant]

My wife and I have found World First to be very good as they base the premium on your exact condition at the time and not just a generic “cancer” rate. My myeloma went into complete remission last August and my wife has had bowel cancer which metastasised to her lung last year. We have a joint multi-trip worldwide policy for just under £500 a year.
I’ve had no experience of making a claim but so far I’ve been very impressed with them.

Keith

[keithmtParticipant]

I hope all goes well today Tracey, it’s the worst time for you both until you get some solid fact from the consultant about Tony’s condition and treatment plan. I’m sure you’ve looked around this forum and read plenty of experiences here (including mine) many of which have very positive outcomes.

My original diagnosis came from severe pins and needles in my feet but apart from a very occasional “spike” that’s all gone now. I’ve also had a number (4) of kidney stones since 1991 but none of these were related to Myeloma. Tell Tony I know all too well what pain he felt!

Try to keep positive and let us know what happens today.

Kind regards

Keith x

[keithmtParticipant]

I had my HDT-SCT at the Royal Marsden and would echo that they were just wonderful. If you do end up connected to Marsden I think you’ll find that Myeloma is treated in Sutton. I was told I’d only end up in Chelsea if I had a bad infection and needed blood transfusions (as far as I can remember). Needless to say I didnt.

Good luck with what’s ahead.

Keith

[keithmtParticipant]

That’s great news Phil, well done! It’s always great to hear about long remissions (mine’s only 6 months so far) as that’s the holy grail we’re all looking for.

Keep well,

Keith

[keithmtParticipant]

Hi Val,

I had my SCT last April and was fit enough to travel by June. That was a trip to Austria and I don’t think my consultant would have been as happy about it if I was headed for Africa or somewhere with health risks and poor medical support.

I’ve just done a detailed reply to Amanda ( see General / Stem Cell Transplant) on my transplant process so have a read there.

All the best

Keith

• This reply was modified 9 years, 10 months ago by  keithmt.

[keithmtParticipant]

Hi Amanda,

You’ll know by now that everyone’s experiences vary from one to another and I’ll be no different so here goes my story.

I was diagnosed in Aug 2013 when I was 62 and my paraproteins were at 57. After 6 months of CDT they went down to 2 and I was ready for SCT. I read up about the process which scared the hell out of me but as things turned out, the description was far worse than reality.

The stem cell collection and transplant was a breeze (although I got my wife to do my 4 daily injections …… I didn’t feel a thing). In fact, my collection only lasted a day (was warned it might take 2) and they managed to get enough to put some in the freezer in case I need another in future. I had a surreal experience after my cells went back in and was high as a kite for 3 days, feeling as fit as a teenager.

The big side effects come from the high dose therapy (in my case Melphalan) which destroys your cancer cells but also kills you immune system and can effect your entire digestive system.

After this euphoric feeling from the transplant, the Melphalan kicked in 2 days later and I was feeling generally poorly which is when I checked in to the Royal Marsden. I had plenty of nurses coming in and out to check on me and I was allowed visitors (properly gowned up) so wasn’t in “total” isolation. I was initially told I might be in for 3 weeks for my immune system to recover enough to go home but I was out after just 6 days. The next month was the toughest part for me, I had no appetite and felt very weak and was pleased my wife was around to help me through that. But gradually things improved and you get back to normal, it was only my energy levels that were slow to recover.

I had my SCT on April 1st (ha ha) and in July was told the great news that I was in complete remission. My regular blood tests (the latest last week) continue to show undetectable paraproteins and I’m living life to the full.

So don’t worry about what’s ahead, as you go through your SCT just take one day at a time and let the nurses look after you. The Royal Marsden team were just superb and I couldn’t have asked for more TLC and I’m sure it’ll be the same wherever you are headed.

All the best Amanda. Keep positive and remember that if you do go through some tough days, you will come through it and enjoy and long remission.

Kind regards

Keith

• This reply was modified 9 years, 10 months ago by  keithmt.

[keithmtParticipant]

That is just fabulous news Rosie about the Bence Jones, you must be very relieved. I hope the good news keeps coming …….. let me/us know.

Big hugs

Keith

• This reply was modified 9 years, 10 months ago by  keithmt.

[keithmtParticipant]

Hi Katie,

Just to say that during the whole of my time with MM, I was only ever given my paraprotein count. Your mum may or may not get other counts like Carol (light chains etc) but as far as I know (not much!) it might depend on her treatment regime.

Carol, do you know why you had these readings as part of your monitoring?

Keith

[keithmtParticipant]

Well Katie, that’s great and positive news from Carol isn’t it? I’m so pleased to hear that you’re coming up to your remission anniversary Carol. Are you still having tests and checkups in Oz?

Katie, the immediate period after the transplant can be a bit tough and like I said before, your mum really doesn’t need to get into the details of that until that time approaches. If she’s going to have some cycles of drugs first then she nees to focus on that.

I had my transplant on April 1st and although the next 2 months were quite tough (no appetite and no energy), I flew to Austria in the middle of June to go to the Formula 1 race which involved quite a bit of walking, eating and drinking and I was fine.

I love Carol’s statement on thinking of Myeloma more as a chronic disease rather than a classic cancer, that’s great!

Keep well and keep posting.

Keith

[keithmtParticipant]

Hi again Katie,

My transplant was part of the plan from day one. As far as I know they put a person on a set of drugs to suit their condition. In my case it was CDT (Cyclophosphamide, Dexamethasone, Thalidomide) which you take on a monthly cycle when your paraproteins are measured to track how they’re decreasing. As I said, they want to get paraproteins down to as close to zero and I needed 6 cycles (months) to get down to 2, after which the transplant process kicks in. I’d suggest it’s far too early for you to get into the detail of that.

So unless your mum has some specific circumstances, I cannot imagine her having a transplant before she goes through the drug process.

Was it her backache that lead to the diagnosis? I had pins and needles in my feet but everyone is different. I imagine that the MRI is just to establish what is causing her backache.

I did ask at the end of the drugs, when my paraproteins were down at 2, whether I was classified as “in remission” and as far as I remember they said effectively I was but the transplant process would ensure the cancer cells remaining in my bone marrow were destroyed and that remission would then have a better chance of lasting longer. So it was only after my transplant that I was officially told I was in complete remission. I went to Marsden as part of my NHS treatment as that’s the closest place that does transplants. Bear in mind that this happens at the Marsden near Sutton and not in Chelsea. You could ask where your mum will be getting hers.

And yes, Gareth departed whilst I was in there but I think he’s still involved with the Marsden.

I hope this helps a bit more, please post again if anything else crops up and keep us updated.

Kind regards

Keith

[keithmtParticipant]

Hi Katy,

First of all I’m really sorry to hear about your mum but you’ve done a fantastic thing by finding this site and posting your questions. The Internet is a scary place to research any illness as you always get such a wide view of opinions but at least this site comes from people who really understand their condition.

The next bit of advice is to remember that everyone with Myeloma is different so you won’t be able to relate everything to your mum. However, you will get a good idea from other people’s experiences. I’ll also say what I’ve said before on here, don’t be too scared by people’s bad experiences as they may never happen to your mum, but take heart from the positive side experiences as Myeloma can have good outcomes (like mine and I was also 62 at diagnosis).

As to your questions, I’m not sure what paraprotein levels need to be for the drug regime to kick in. I was also asymptomatic but my pp level was 57 and so I went straight onto the CDT regime which includes a chemo drug.

I’m not aware if they’d ever consider a transplant before drugs but other people here might be. As far as I understand they want to get paraproteins down as close to zero as possible before transplant to give the best chance of a long remission. Mine was brought down 2 when I had my transplant.

I was treated at the Royal Surrey in Guildford and had my transplant at the Royal Marsden and never, for one minute, considered a second opinion. Unless you have some doubt about the diagnosis I’m not sure why you’re thinking about one.

You may already know this but the general rule and in my case, chemo is taken in tablet form and not like some cancers where you have to go for regular and long intravenous infusions. Also, the side effects can be much less with our chemo, in my case no hair loss or sickness.

This initial phase where you and your mum are is awful, I remember it well. The words incurable cancer, chemo, transplants are shattering and terrifying and we all understand what you’re both going through.

Take heart from the fact that your mum has been diagnosed extremely early (even earlier than me) and assuming that she’s generally fit and well for her age, she stands a great chance of coming through this with a very good outcome. Less than a year after my diagnosis my treatment put me into full remission and I am living life to the full. I was determined to beat this when I was diagnosed and I think a positive attitude by both you and your mum can be as beneficial as all the treatment.

So, please keep posting on this site and keep us up to date with progress. Bombard the consultant with all the questions you have as you’ll be able to cope better knowing actual facts rather that just worrying. Ask questions and advice on this forum but just bear in mind that we’re all different. I’ve also read on here many positive comments about the Myeloma Helpline where you may get more clinically accurate advice or just a friendly ear.

Thoughts and prayers are with you.

Keith

[keithmtParticipant]

I know what you mean about taste, I had a similar experience. I don’t think there’s much you can do about it except find those things to eat which aren’t as bad as other things. I found sweet things best.

As for you jumping down your wife’s throat let me leave you with these thoughts as I also had my occasional “moments”. First off, it’s not her fault that you’ve got this rubbish disease and whatever she does or says it’s because she’s desperately trying to do something to help. Secondly, what she is going through is, in some respects, worse for her than for you. I know, because I’ve seen it from both sides. Not only is she extremely worried about your condition, treatment and outcome, but she has absolutely NO control over anything and all she can do is try and help where she can. You jumping at her will make her feel dreadful so PLEASE tell her you understand how she feels and ask her to understand if there are times you are edgy. You need her help to get through this.
As for MRI, I’ve only ever had one for a back injury and for some reason I found it really relaxing and fell asleep. I know that’s not the experience for some people.

Sorry for rambling again.

[keithmtParticipant]

Hi Alan,

I was in your position last April and whilst we’re all different, my process was much less stressful than I anticipated.

First off, if (like me) you’re not a big fan of the biopsy process then ask for sedation. Let them know in advance as the effort for them is slightly more, so you won’t get it on the day if you leave it until then to ask. The Royal Marsden where my collection and transplant was done were more than happy to do this.

My preparation for stem cell collection involved having daily injections for a few days. Being a wimp, I got my wife to do them although they never hurt, even when I did the first few.

I was told my stem cell collection might take 2 days to get enough but as it turned out, they collected enough for 2 transplants on day one. Just a word on needles (can you spot a theme here ….. yes, I am a wimp when it comes to needles), i was warned a couple of time that they use a big needle for the cell collection and honestly, I hardly felt a thing.

Anyway, the collection was followed by a big dose of Melphalan chemo which itself was followed by my stem cells being put back in. The next few days were amazing as I felt like a new person but eventually the chemo kicked in and I was admitted as planned.

The next few days were rubbish to be honest but the Royal Marsden were just brilliant at looking after me. Having been told I might be in for 2-3 weeks, my bloods had recovered well enough to be let home after 6 days!

So, what I’m trying to say in all this ramble is that don’t be too daunted about what’s in front of you, just take it a day at a time and ask for help from people when you need it. You’ll be fine.

Just to close my life history, last August I went into complete remission and just today I have been for one of my 2 monthly test results and I’m still all clear and enjoying life to the full.

All the best for your upcoming treatment, let us know how it goes.

Keith

[keithmtParticipant]

That is such a pain Rosie, just what you needed eh? I know it’s going to be on your mind but don’t get bogged down with worry, the results might be much better than you expect so try and hang on until you know.

Thinking of you.

Keith

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