[greg777Participant]

Hi Rob,

Welcome to the forum although sorry you had to find it. MM can be a tricky little fellow but hopefully you find support on here as and when you need it. There are loads of good news stories out there and treatments developing all the time so whilst it is a massive shock to get the diagnosis, it is a very treatable disease and I hope you find that with the VTD.

All the very best,

Greg

[greg777Participant]

Hi Puglady,

I would definitely go get it checked out. I have had 4 biopsies and sometimes got a lingering dullness around the entry point but nothing that spread to the hip or thigh. It may very well be nothing but best to check I reckon.

Wishing you all the very best,

Greg

[greg777Participant]

Hi Therese,

I have had the good and the bad when it comes to groin pain.

The bad first – Groin pain is how I first got diagnosed with myeloma. It turned out to be a very bad blood clot stretching up into my abdomen. However, it was a really bad pain and I could hardly walk, so it should be fairly obvious if it is this, and if the Doctor has seen your Mum, I doubt that it is.

The good – over the past year, I have had intermittent pain in the same area as where the blood clot occurred. Each time, it subsided within a few days – often, it felt like swollen lymph nodes that went back down again after a few days – maybe it could be that? Or it could just be a pulled muscle which should correct itself in a couple of days.

I would keep a close eye on it and if it hasn’t improved in a couple of days, get in contact with the Doctors again.

Hope it all gets sorted out soon,

Greg

[greg777Participant]

Hi Ian,

I had this discussion with my consultant a couple of weeks ago. I had 6 months of Zometa before SCT and then had an 18 month break. My consultant thinks I should go back on Zometa as the benefits outweigh the negatives in his view. He mentioned the 2 year period that you mentioned and said he would advise the infusion once every quarter rather than every month going forward. I’ve been lucky in that i’ve had no side effects from it (at least none I could specifically pin to that) so I have accepted the plan. Would be interested to hear others’ thoughts as well.

Greg

[greg777Participant]

Hi Phil,

Fantastic news – well done! I am coming up for 1 year post-SCT, so to read stories like yours 6 years out is great. Wishing you all the very best for the future.

Greg

[greg777Participant]

Hi Pepz,
<p style=”text-align: left;”>Very sorry to read about your Dad’s diagnosis and I wish you and all your family the very best at this difficult time. I think “support” means different things to different people but given it is all very new for you, a good place to start might be to read some myeloma brochures so that everyone has chance to understand at a high level what you are facing. You will quickly find out that myeloma can affect individuals in very different ways but I found these brochures to be a good support in trying to get my head around things at an early stage. Myeloma UK has a good brochure, Macmillan and other blood cancer societies also have good brochures. Beyond that, signing up to these forums (as well as others like Macmillan and Anthony Nolan) helped me in sharing experiences with those going through similar things. I was also given the name of a nurse specialist at the hospital who was a great point of contact in the early stages, answering questions and pointing me in the right direction. There are also lots of good counselling services out there if you feel you would benefit from this as well. And when all is said and done, I found the best support was just knowing that my family were there for me. I don’t underestimate how horrible the initial diagnosis is but just being there for one another and talking was a good way to start to get my head around what was happening.</p>
I hope this helps in some way and please don’t hesitate to ask anything further.

All the very best,

Greg

[greg777Participant]

Hi Richard,

Thanks very much for doing this, let’s hope it will be accepted and set up shortly. I think it would be a good addition to the Myeloma UK Forum as whilst I still consider myself to be primarily a MM patient, I also consider myself a BMT patient and it would be good to share experiences, ask questions on both in a connected way. For example, I am doing much better than I was a few months ago but am noticing that my immune system is pretty poor at the moment – just taking a long time to shift coughs and colds – is that the effects of having had myeloma (I am currently stringent complete response for which I am very grateful), the effects of the BMT, or a mixture of both. Also, having had no problems with joints, I am beginning to get pains in the feet, ankles and knees. Again, it is hard to tell what is causing this.

How did you feel in the later stages post-transplant  (ie, post one year) and how are you feeling now?

Cheers,

Greg

[greg777Participant]

Hi Richard,

I think this would be a great idea. I had a BMT in February this year. I have signed up to the BMT forum on the Macmillan website and in six months have come across no-one who has done the procedure after being diagnosed with MM. So it would be great to connect with people in exactly the same boat as MM has its own challenges and BMT’s have their own challenges as well so it would be good to connect the two.

And it is fantastic to hear that you are still going strong 12 years post-transplant – at age 38, yours is exactly the story I want to hear!

Many thanks,

Greg

[greg777Participant]

Hi Chris,

I did the VCD regime for 6 cycles last year and I must say I didn’t experience much if any side effects at all. I really hope you experience the same.

Merry Christmas and happy new year to you as well.

Greg

[greg777Participant]

Hi Valerie,

Many thanks for sharing your amazing story. As someone who was diagnosed with myeloma at age 36, it gives me so much hope for the future. Merry Christmas and a happy new year to you as well.

Greg

[greg777Participant]

I completely agree that it is extortionate. Although the hospital in Bristol is right in the city centre and all other car parks would be even more expensive, so for me it is the best of a bad job. I think there are some organisations that help with financial costs of things like car parking and I have met with some fellow patients who get paid for taxi’s into the hospital. In Bristol, I think they are stuck between a rock and a hard place because demand is so high and space is so limited. Most of the time you have to give yourself an hour to find a car parking space even before you have paid the extortionate fee! I saw an article about a month ago I think which reported on hospital car parking charges so maybe it is something that will be looked into in the future.

Greg

[greg777Participant]

Hi Susie,

I definitely empathise with you. In Bristol the minimum charge is 3.40 and no preference given to anyone. It can become very costly!

Bristol does do a weekly ticket which helps save money if you have more than one  visit a week – does your hospital do anything like that?

Greg

[greg777Participant]

Hi Neil,

MM can affect people in a very individual way but the type of things I would be asking are:

– how many cycles of VCD will I have

– what is the barometer of success of the treatment

– what are the next steps after VCD – watch and wait, maintenance, SCT

– administration things like who should I contact if problems, what side effects should you be looking out, etc

Really hope this helps in some way.

Greg

[greg777Participant]

Hi Neil,

Thanks for posting. Hopefully you will find support on here from loads of people who are in a similar position. I had a really rough time with panic and anxiety attacks. One thing that really helped me was having regular sessions with a psychologist. They really helped me understand how my brain was working and how to deal with the situation I was in and after a few months I can genuinely say that I am feeling much more in control of things. Your hospital team should be able to refer you to one if you think this is the right route for you.

Other than that, all I can say is that whilst everyone has a unique journey with MM, everyone on here is always available to support you in any way we can. I know that these forums certainly helped me to feel less alone so please use them to help you in whatever way you need.

All the very best
<p style=”text-align: center;”>Greg</p>

[greg777Participant]

Hi Dean,

No problem – greg_777@Hotmail.co.uk

Cheers

Greg

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