[katybParticipant]

Hi There,

My mum has recently been diagnosed with Asymptomatic Meyloma. Naturally I’m worried and have loads of questions, although when I read through all your posts I don’t think I have all the information to offer, to be honest, I think we were all in shock so I’m struggling to remember all the figures quoted!

but I think ( I will confirm once we get the letter from the consultant) that her paraprotein readings were 21, 23, 25.7 or 27.5 ( this is the one that I appear to of lost my memory on)

I understand that they consider beginning chemo at 30? Is this right, based on mum’s trend we could be there soon? Do you think?

what i don’t know & stupidly didn’t ask, have any of you gone for transplant before chemo? Would you recommend us looking in to this?

we are currently under a hospital in the Midlands but I live in London, did any of you or would you recommend a 2nd opinion from the proffessor at the royal marsden.

Naturally I love my mum and want her around for many many years ( she’s 62 ) this is all such a shock to us, I would welcome any help advise & comforting stories, as I need to get some sleep, and swollen teary eyes isn’t my best look!

 

 

[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

[katybParticipant]

Keith,

I cannot thank you enough for your terrifically detailed positive response, thank you, it means so much.

You’re right, at this stage all i am wanting to do is make it go away for my Mum, so thinking right, transplant, royal marsden, gareth morgan ( who i found on the computer, but has since taken a post in Arkansas!)

But yes, I need to slow down, and take the positives. after you had completed the chemo did they offer you the transplant or is this something you requested? was this done privately at the Marsden?

when you say you went in to full remission was this from the drugs? and then you had the transplant, please forgive my ignorance.

Currently Mum has a dreadful back pain, we are hoping that its muscular and not a symptom of the meyloma, they are going to give mum an MRI, keeping everything crossed.

I am so delighted to hear you are living life to the full and you have come out of this with a positive outlook on life.

Thank you

Katie

 

[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

[katybParticipant]

It really does help, thank you so much, I forwarded your replies on to my mum, dad & brother, we’re all so appreciative of the time taken to share your story, thank you.

It wasn’t the back ache that brought Mum to her diagnosis, it was detected during a celiac blood test, the were no symptoms ( again, trying to take the positives from this)

Mum’s back has been hurting for the past week, everything crossed that it’s muscular, she’s due to have an MRI scan next week.

How was your recovery after the transplant?

Many thanks, enjoy your wknd, I’ll leave you in peace….

 

[CarolsymonsParticipant]

Katy I was 63 at diagnosis and like Keith, less than a year later had had my transplant in London and am approaching my first year in complete remission next week. I am back home in Australia, living life to the full so please don’t despair for your mum. The specialist in London told me to think of myeloma more as a chronic disease nowadays, rather than incurable and I think that helped me remain positive through the treatment. I can’t say the treatment was easy…it wasn’t, but I recovered well after transplant with no infections. If your mum is healthy now then I think that also helps towards a positive outcome. I do hope her back pain is unrelated. For me the myeloma gremlins ate my collarbone which led to diagnosis, but this is unusual. Be strong for your mum, she will need you.

Carol

[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

[CarolsymonsParticipant]

Hi Keith
Yes still on tests in Oz and monthly parmidronate. Just been moved to 6 weekly checks (next one on Thursday) but hoping to go to 3 monthly as I want to spend at least 3 months travelling in Europe this year if still in remission. If all clear next week then booking a cruise to Fiji, New Guinea or New Zealand….depending on availability. So all in all life is good!

Katy keep your mum positive…I truly believe that helped me. I went into every treatment believing it would work and luckily it did.

Carol

[katybParticipant]

Thank you Carol, great news and so so lovely to hear about all your upcoming travels. my parents are due to go to Australia & NZ for 6 weeks in April, her next blood count is 2 weeks before so keeping everything crossed that her levels haven’t increased and she can jet off..

Can I ask what your para-protein levels were at when you started treatment?

My mum is amazing and remaining very positive, she’s taking lots of Tumeric as we read that Tumeric had great results, we have read and heard great things about it ( also known as cucumin)

Thank you Keith, on reading both your experiences what I hear loud & clear is a positive outlook & a love life is key, my mum has of both these.

Thank you.

[katybParticipant]

* love of life! not love life, sorry….

[CarolsymonsParticipant]

Hi Katy
I was lucky my collarbone collapsed as it gave me an early diagnosis. In fact without the bone damage I would have just been on watch and wait. My paraprotein was 10 but rose to 18.4 as I delayed initial chemo treatment while undergoing radiotherapy of my collarbone. I have iga lambda myeloma and my lambda light chains were 526 (5.7 to 26.3 is normal). Light chain ratio was 0.02 and only reached normal level after transplant. Also I only had 25% cells in my bone marrow, less than 1% before transplant and undetectable at the 100 day check after transplant. So all in all I have definitely been one of the lucky ones. Healthy beforehand, early diagnosis, low numbers, excellent response to initial treatment and transplant and so far still in stringent complete remission. I don’t know my cytogenetic profile, so or even if it was done when I was diagnosed in London, but perhaps ignorance is bliss. If I knew I were high risk, I think I would be far more anxious about the future than I am now.

Sending positive thoughts to your mum.

Carol

[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

[CarolsymonsParticipant]

Hi Keith
I guess because my paraprotein was quite low but my lambda light chains were raised they were mentioned at diagnosis. I had the standard initial treatment with CDT and while my paraprotein dropped quickly, my lambda light chains were slower and immediately started rising when CDT finished and I was waiting for transplant. Even now while my paraprotein is undetectable my lambda light chains have already crept up to 36. Not enough to be considered out of remission but still worrying. However my kappa/lambda ratio is still normal. Keith maybe light chains weren’t a problem with your type of myeloma?

Carol

[mhnevillParticipant]

Hi Katie

Sorry your mum has had to join this elite club! However, as everyone says, don’t panic. Myeloma isn’t a walk in the park, but nor is it the immediate death threat it used to be.

Your asked about para protein levels before treatment. I know 30 is bandied around as the marker for the start of treatment, but my Consultant said it is the rate of the increase rather than just the figures they take into account.

I didn’t have a SCT but am doing well over 4 years post diagnosis. I am just on 70. I had six rounds of CDT and since then have had four weekly infusions of ZOMETA for bone strengthening.

Best wishes to your Mum. Do keep asking questions. everyone on here would say knowledge is power.

Mavis x

[katybParticipant]

Hi Mavis,

Thank you for your reply, I am so pleased to of found this site and although Mum isn’t on here yet i’m feeding back all positive stories, I will encourage her to post herself when the time is right for her.

Mum’s next appointment is 23rd March, current levels 25.7 I have everything crossed they haven’t raised to 30 and they want to begin treatment as my parents are due to fly to Australia & NZ ( once in a lifetime trip)

When you say on 70 is that your PP levels? do you take tumeric ( also known as cucurmin) I have read some great results ( even on the cancer research site) so it must’ve been trialled, if you haven’t just Google turmeric myloma, Mum is taken it in tablet form the highest strength x 3 a day

 

Thank you for your positive reply and keep well. Katie x

[Author]

Posts