[JaperKHParticipant]

Hi everyone,

I just wanted to introduce myself and, if I may, ask a few questions.

My mum was diagnosed with MGUS some years ago. According to recent blood tests that MGUS has very likely turned into active Myeloma, which was obviously distressing to learn. We're still waiting on the results from the bone marrow biopsy. But the haematologist has suggested that, given the bloodwork, it's highly unlikely her MGUS has in fact not become active Myeloma.

That haematologist has also suggested my mum presently start a cycle of chemo, and harvest stem cells, too. However, my family are not making any decisions about treatment until we've received a second opinion and the biopsy results. Further, we also want to try consult a Myeloma specialist.

Since learning of the diagnosis two days ago I've tried to research Myeloma as much as possible. I know that the disease is strictly speaking incurable and that its progression can vary significantly in individuals. But I'm still unsure about how my mum can begin taking steps to best treat herself. From what I understand, much more that a blood test and bone marrow biopsy is necessary to gain a decent understanding of how the disease is affecting you.

So my main question is: are there any additional tests she should have as soon as possible? But also, can anyone recommend a specialist in the London area? I know I can get answers to my questions by doing thorough research. But it's clear there's a huge amount of literature on Myeloma in general, and so I'm feeling more than a bit hopeless right now.

Thanks,

Jasper.

[CarolsymonsParticipant]

Hi Jasper

I am in London, diagnosed April this year at Ealing Hospital west London, after the myeloma gremlins ate my collar bone! 4 weeks ago I completed 6 cycles (18 weeks) of initial drug therapy which seems to be standard here in the UK and comprised CTD (cyclophosphamide, dexamethasone and thalidomide). I have had an excellent response and am now moving towards SCT (stem cell transplant). For this I have been referred to Hammersmith Hospital.

There are others on this forum who have been part of a clinical trial at University Hospital central London, which has given them access to myeloma specialists and to Velcade, a drug that is available as up front treatment in the US and Australia, but not in the UK, unless you sign up to a clinical trial. But…..CTD worked for me and I am saving Velcade for when I relapse. Also some people have developed neuropathy from Velcade, which unfortunately can also be a side effect of thalidomide.

Actually, the side effects from the 3 drugs in the CTD regime are vey unpleasant, but you have to do whatever it takes to beat the cancer down.

Carol

[CarolsymonsParticipant]

You asked about extra tests. As well as the blood test and bone marrow biopsy, I also had a skeletal survey to check for other bone damage and a CT scan when I was diagnosed.

Carol

[eveParticipant]

Hi Jasper

Well I can say you have come to the right place for information,if you go on the net,you will find a lot of information that is well out of date.
The first thing is this disease is very individual ,no one is exactly the same,and no treatment is going to work the same on individuals.
I can say London is one of the best places to be treated,lots of trial plus consultants who specials in Myeloma.
My advice is ring Ellen or Maggi on the free number at the top of this page,and they can send you all the information,plus a list of Consultants who specialise in Myeloma.
As a family,you should slow down,this is a long journey and a big learning curve.
I know how you feel,because every patient and carer has been in your position,lots of people get years of remission,and lots do not. You will learn to cope with Myeloma because you have no choice,learn as much as you can,any doctor will tell you it's treatable but as you said incurable .

It is normal to feel hopeless ,your mum will have a BMB,plus Skelton X-Ray plus MRI. This will tell them percentage in BMB,plus x ray will show damage on large bones,MRI scan will show damage to spine and ribs.All this is normal and will happen once confirmed Myeloma..

Welcome to the roller coaster Jasper,I hope you find this site informative ,plus I hope as people on here help you,you will help other people,tell your mum to take deep breaths,she is not alone,and could find this site very helpful in the future,.Eve

[JaperKHParticipant]

Hi Carol,

Thanks for taking the time to reply in detail – it's really appreciated. I'm sorry to hear about your diagnosis, but glad to hear that you've had an excellent response to the therapy. By the sound of things London is generally a good place to be treated, which is reassuring to hear.

I wish you luck with your transplant.

Best.

[JaperKHParticipant]

Hi Eve,

Many thanks for taking the time to reply in such detail. Your message contained some very helpful information for which I'm really grateful.

I will certainly ring the helpline at some point very soon. I will also do as you suggest and learn as much as I can about the disease. I suspect this will be my main way of coming to terms with it, as well as gaining some sense of control. Hopefully it will also enable me to help mum.

It's encouraging to hear that London is a good place to seek treatment.

Best, J.

[Pilgrim01Participant]

Hello, Jasper. Sorry to hear that your Mother has been diagnosed with Myeloma, or that there is the prospect that she will. To answer your questions directly; The tests that will diagnose the myeloma are as you say the blood counts and the bone marrow. The blood tests will determine the type of myeloma that may be present and the bone marrow test will determine the extent of the disease. In addition I would recommend that your mother has a full body scan to determine any potential bone damage.

I am biased as I live near London, but I believe that the beast place for treatment is London. Your mother also has the right to be treated anywhere as a cancer patient. Royal Marsden in London or in Sutton will serve your Mother very well, but I have heard good reports about UCLH as well.

I hope that this helps.

Tim

[VickiParticipant]

Hi there,

My partner Colin had several blood test, a skeletal survey and also a 24 hour urine sample test to count the bence jones light chains which is a symptom too. Like the others he had 7cycles of induction treatment andnthenna stem cell transplant of his own cells in November last year. It was a real roller coaster of a ride as he had lots of infections and we had a few visits to hospital during the induction treatment but it was ok in the end 🙂

Ref myeloma we are told its not curable but it is eminently treatable, so good luck

Vicki and Colin x

[Ang287Participant]

Hi Jasper
Sorry to hear about your Mum and the strong possibility that she has now developed MM. After seeing our GP with results of blood tests we were very worried about the diagnosis but once we saw the haematologist we were happier as he said these days it is manageable and not like years ago – don't read anything on the internet and try and just keep to this site as you can read really out of date things.
At our first visit with our haematologist who specialises in myeloma treatment arrangements were made for a bone marrow biopsy and he had a full skeletal survey on that day also to see which bones were affected so that all results were available at our next appointment with his haematologist and at that point my husband commenced his 6 months of chemo and came home with two big bags of tablets that we then spread all over our dining table in disbelief! My husband Graham wanted to take the trial drugs and was randomised (which means his info is fed into a computer and then a decision is made). He got the trial drugs and he finished his 6 months of chemo 2 weeks ago. We now have an appointment tomorrow to start the procedure for the stem cell transplant. He is having his stem cells removed on 10th December, all being well, and we are hoping he will have the stem cell treatment soon after that.
My husband was ill with horrendous pains in his back for nearly 5 months before an MRI scan was arranged, and that was the start of getting to the diagnosis and it was a complete shock.
I would also like to support MANCHESTER as a fantastic place to receive treatment for multiple myeloma and I think we are very lucky from that point of view. It's not just good football teams that we have! If my husband had been a private patient I don't think he could have received better treatment so far and I just hope this continues.
Your Mum must be very proud of your support and help.
Angela

[JaperKHParticipant]

Hi Tim,

Thanks for taking the time to reply.

Sadly, we've now learnt that mum does indeed have Myeloma. A number of people have told us now that the Marsden and UCH both offer great treatment. So thanks for further confirming that fact. Your opinion is really appreciated in this stressful time.

Best,

J.

[JaperKHParticipant]

Hi Vicki and Colin,

Just to say that I'm very grateful for your words, and that I wish you continued success in the future.

Best,

J.

[mhnevillParticipant]

Hi Jaspar

Sorry we have had to welcome you to this Site, but as you are already finding, it is full of helpful people.

You didn't say how your mum was originally diagnosed or how old she is. I would just put another side to what has been said. Because CDT or the Trial alternatives work so well for the majority of people, your mum doesn't have to move, he'll for leather, down the route to SCT. It is a very unpleasant experience, but as people on here who have experienced it say, "doable!" But not everyone gets a long remission. There could be the alternative of harvesting cells for a later SCT if your mum wanted it.
I think age is a factor in making these decisions. I am 68 years and haven't gone down the SCT route. I had CDT and am now 16 months into remission and know there are other drugs out there, more coming on stream all the time, for when I do relapse.

All best wishes to you and your mum.

Mavis

[JaperKHParticipant]

Hi Mavis,

Thanks for the warm welcome.

You're right, I should have at least mentioned my mum's age. She's just turned 55 and was diagnosed through routine blood tests, which I think were part of one of her usual checkups. My mum's suffered from pyoderma gangrenosum for much of her life and so blood tests are nothing out of the ordinary.

Thanks also for your opinion on the difficult question of whether to opt for a transplant. We had a consultation with the haematologist last night that I found a bit unnerving, mainly because he told mum that an allogeneic transplant could be classed as curative (which, based on the research I've seen, is not correct) but also because he failed to make clear to her just how risky that procedure can be. Essentially, he thinks mum should have induction threapy (VCD) followed by high-dose therapy ending with an ASCT. And I don't think there's anything in principle wrong with him proposing that line of treatment. But for him to not fully explain the implications of that choice, nor outline alternative options, does strike me as some kind of failing.

That said, he did, to his credit, refer us to a Myoloma specialist, and in other respects he was incredibly helpful.

Very stressful times!

[JaperKHParticipant]

Hi Angela,

I'm grateful for your taking the time to write.

I'm sorry to hear Graham suffered through bad pain for almost five months, but very pleased to know that, since then, all seems to have gone as well as well as can be expected. My mum has now had a couple more tests and the positive news is that her bones and kidneys are currently in good condition.

Thanks for the advice about Manchester. We are trying to explore all our options and so its nice to know there is yet another recommended place. Also, I will do as you suggest and try and find only the good information on the web, rather than the outdated stuff.

I wish you luck with the transplant.

Best, J.

[eveParticipant]

Hi again Jasper

I think you should find out what Myeloma your mum has,EG my husband has IgG bence jones knapper light chains,also has complications,plus he had a tumour,leisons,and a lot of bones effected. The damage causes the pain,but it is trying to get the Myeloma controlled is the problem,some people have an aggressive form others do not,and some people are high risk,meaning as soon as treatment stops it comes back.some people are non Secretor .

You need information before you even think of SCT,if you ask the right questions,you will get the right answers,please ring Ellen,she can tell you what you need to ask. Eve

[Author]

Posts