During the stem cell extraction, she…[Read more]

I’m sorry to hear that you are suffering from PN as I am also suffering from the same issue. I had 2 cycles of VTD  but suffered from servere stomach pain where I ended up in A&E, so they took me off the thalidomide all together.

Even after one cycle I started to feel issues with my thighs, calves and feet where they were feeling numb…[Read more]

Just thought I would update you on where I am now as you were kind enough to offer me some advice on my issues with PN.

My wife and I yesterday, paid our first visit to Nottingham City Hospital where my stem cell transplant is now tentatively planned for around the beginning of January 2018. Not looking forward to it but what else can we…[Read more]

You timed your post perfectly as this morning I have an appointment at the hospital to see where my Paraprotein levels are, as I have just finished my first round of chemotherapy treatment over the last 4 months which I must admit, has been a very rocky ride to say the least. Still, I have to see it as a means to an end and in…[Read more]

Thank you for your feedback. To start off with I was on a VTD regimen but suffered so may side effects from the thalidomide they took me off this pretty much straight away and have replaced it with Cyclosphosphamide which I seem to be far more tolerant to. Then came the side effects from the Velcade where I read somewhere that there was…[Read more]

I’m currently in my third cycle of chemotherapy prior to a SCT around December, early January if my Paraprotein levels continue to fall as they are doing however, a major current side effect from the Velcade chemotherapy, is that I am experiencing quite severe pain in my thighs, calves and feet which is causing me sleepless nights…[Read more]

Sorry for the late input but I have not been on the site for a while.

I was diagnosed with smouldering Myeloma around 21 months ago and after reading “Margaret’s Blog”, decided to try a supplement regime which includes both Curcumin and Theracurmin. I read somewhere that it’s not about the dose, but more of what you can absorb. Evidently,…[Read more]

Sorry to hear of the dilemma which you and your husband are facing.

Do take a look at the Spring 2016 copy of the Myeloma Matters magazine where on page 10 and 11, there is an article on the role of the welfare rights advisor, who I suggest you speak to. You should be able to find one at your Macmillan centre where again they should…[Read more]

It’s now around 18 months since I was diagnosed and am still smouldering, and I am wondering what your Paraprotein levels are? Mine…[Read more]

I had my scan one day and then the following day, received a call from my GP as the results from the scan were through. It was then only a few days before I saw my encologist at the hospital for the first time.

As another member of the forum has indicated, this seems like fairly good news for your mother.

Regards,

Robert

Sadly, I too have been suffering from a flu type virus for the last couple of weeks although saying this, I am now fortunately starting to come out the other end.

I started with a really high temperature(39.2 degrees C)  so call the local Myeloma help line who suggested that based on what I had to tell them, a visit to the hospital was…[Read more]

Thanks for your comments as they are really appreciated.

I’ve not really asked about any future B12 injections but will do this in due course. The health professional who administered the injections, did suggest that I may need a continuing top up every 3 months, which would be fine by me. My wife also tells me that my skin tone has c…[Read more]

As promised in my last post, I thought I would send you a further update.

This morning I had a scheduled meeting with my haematologist at my local hospital. All my previously recorded paraprotein levels had been around 26 or 27 however, this time they had fallen to their lowest with a score of 24, so I was really pleased. As I have…[Read more]

May thanks for your response.

Since I was diagnosed in June of last year, I have had five appointments with my haematologist and on each occasion, I have obtained copies of my blood test results. As a side issue, I am under the Derby Royal Hospital who I have to say, are excellent. Anyway, I am plotting in excel around 18 different it…[Read more]

In June of last year, I was diagnosed with smouldering Myeloma and have a session with my haematologist every 8 weeks.  During my last meeting, my blood test results revealed that I was low on levels of vitamin B12 and therefore, I am being asked to have a course of six injections, over a period of 12 days. Just wondered if…[Read more]

Don’t know if orangelily has responded however, I have found this in Amazon/Kindle which may be the book that is being referred to. Please see below for the…[Read more]

I can certainly relate to the increased anxiousness as you get closer to that 6 week/8 week blood test. Sleepless nights a week before the test in conjunction with being a bit of a grouch – so my wife tells me!  I saw another consultant last Monday at my local hospital who asked me how I was? I responded that I had actually come to t…[Read more]

Can you post a copy of the article?

Regards,

Robert

A warm welcome to the forum.

May I ask exactly what supplements you are taking or, thinking of taking?

Regards,

Robert

I am 62 years old and was only diagnosed some 4 months ago. I had a MRI scan for a long standing back problem which by the way, was totally separate to the Myeloma which they actually found during the scan, so a real shock. As I have said, I do however, consider myself one of the lucky ones as I am still at the smouldering stage but…[Read more]

As promised, now that I am back in the UK I thought I would update you following my last post.

I have only been diagnosed with Myeloma for around 4 months which is currently at the smouldering stage and was found quite by chance, so I consider myself lucky in one way, but very unlucky in another…

I am trying very hard to stay at the…[Read more]

After reading your comments, my heart goes out to you and at such a young age, you should not be facing the situation with your father and his illness. Myeloma like any other cancer, knows no boundaries.

I too am a MM sufferer but at the moment, I am still at the smouldering stage and trying to do what I can to stay there. I have…[Read more]

I am out of the UK at the moment on holiday however, I will drop you a more detailed note when I return as I have some additional material which I will send to you as a reference.

By the way, the weather in Gran Canaria is fantastic and just what the doctor ordered…

A warm welcome.

i was diagnosed with smouldering myeloma around 3 months ago and am currently on a watch and wait programme but am trying to do want ever I can to remain at this level. I guess only time will tell here.

As part of my diagnosis I also had blood tests, MRI scan, skeletal scan and then a bone marrow biopsy where the doctor…[Read more]

Welcome to this awful club, as I too have just been diagnosed with smouldering Myeloma.

It is interesting to hear that you are on a course of bisphosphonates infusions which I must admit, I am somewhat ignorant of however, thanks to Google I now know they are related to bone and calcium issues.

Do you know your calcium levels an…[Read more]

Just been on the nowicantravel.co.uk web site where I was surprised to see they actually had “Smouldering Myeloma” listed in their pull down menu options, which is the first travel insurance web site to have this. They agreed to cover my wife and I to include my condition, for 2 weeks in the Canaries, for £43.72 so decided to take th…[Read more]

Many thanks to all those who have sent me their thoughts. I agree that it’s a matter of risk but as I am in the very early stages of smouldering Myeloma, may still do this however, I am conscious that insurance companies will always try to wriggle out of anything that they can.

I will most certainly take a look at…[Read more]

Is anyone out there taking either Inositol (IP6) and/or Hexaphosphate as a supplement and if so, may I ask your thoughts on this>

Regards,

Robert

Can anyone recommend a UK travel insurance company who understands smouldering myeloma and prices their policies accordingly?

Thanks in advance for any feedback.

Regards,

Robert

I have only had one bone marrow aspiration so far which for me, is quite enough.

I had a local anaesthetic but once the doctor started to bore into my hip, it literally felt like a hot needle so I had another couple of shots of whatever it was they were pumping into me. This was fine until they then started to enter the hip bone which…[Read more]

Thanks again for the comments and feedback. I must admit that I had never heard of POMI-T it but then again, prior to around 2 months ago I would not have had any reason to look, but now is a slightly different matter.

I am pretty happy with my current supplement regimen and will stick with this at present, as I’m getting the majority…[Read more]

Good to hear that your consultant said taking it, will probably not do any harm.

May I ask what dosage of curcumin you currently take?

Regards,

Robert

Thanks for your positive comments and may I say that I admire the manner in which you are managing your issue by taking one day at a time and not thinking too far ahead.

Wishing you continued good luck.

Regards,

Robert

I cannot really comment on the issues of side effects, as my current “smouldering” position is just watch and wait however, if you are not happy with anything, then suggest you contact you husband’s myeloma nurse specialist at your myeloma clinic or, or seek further advice from your GP.  Also, don’t be afraid to ask questions so you can u…[Read more]

Thanks again for the feedback.

I have already read with interest the story of TAB who seems to have had great success with Curcumin, but appreciate that although this seems to have worked for him, it may not work for others as Myeloma seems to be so individual.

Anyway, thanks once again.

Regards,

Robert

Thanks for your comments of support.

<span style=”background-color: rgba(255, 255, 255, 0);”>Must admit, I have not looked at anything to do with treatment as I am not at that stage yet but reading the many posts from others, the treatment does seems to have some rather harsh Side effects.</span>

it goes without saying that I hope…[Read more]

Happy weekend to you all.

May I ask if anyone out there is taking either Curcumin or, Theracumin.

Would also appreciate anyone’s thoughts on this.

Regards,

Robert

Thanks for your valued feed back and I will certainly try and do whatever it takes to remain at my current smouldering level.

My thoughts are with you and I sincerely hope that you continue to feel better.

Regards,

Robert

I did a copy and paste on my last post, which did not seem to work so here goes again.

Thank you for your response as it’s nice to hear from someone in a similar situation to myself.

At my last meeting with my haematologist, I actually said that if there had been a mix up with various individuals, then I would not have been…[Read more]

I only registered this evening as a new member, so a big hello to everyone out there.

I was diagnosed with smouldering Myeloma around 5 weeks ago, following an MRI scan and then a bone marrow aspiration – which by the way, really hurt! It was a real shock to me as currently, I feel really well, especially as I retired early last…[Read more]