[keznmelParticipant]

Hi there…

My name is Kerry and I'm 36 years old. My partner of 16 years, Melvin was diagnosed with Multiple Myeloma in December 2012. In December 2010 he had a plasmacytoma of the l4 vertabrae. He is currently in hospital with pathological fractures to the ribs and a blood clot on the lung and is in terrible pain. We are waiting to hear what the next stage is. Everything seems to be going wrong and it's such a scary time for us both. I would like to hear from people who are in similar situations pls……

Love Kerry x

[mhnevillParticipant]

Hi Kerry

Sorry to have to welcome you to this special Site where we are all fighting the dreaded MM. You will find lots of support here.

No wonder you feel phased – you both have so much to handle at the moment.
First things first. If Melvin is still in lots of pain tell him to ask to see the Hospital's Pain Team, if he hasn't already. He needs all the help he can get to get the pain under control. It is hard to get into coping mose if you are in so much pain.

Next thing – don't panic. There are so many treatment options now that there will be one for Melvin.

I also had a plasmatoma on my spine which was surgically removed, followed by radiotherepy and, since them regular bisphosonates (now every four weeks by infusion). Did Melvin have similar follow up? I was then diagnosed with MM, but as my Para Protein levels weren't too high and my blood readings and kidneys are OK, I am not having any other treatment at the moment.

So sorry Melvin has all these complications with rib fractures.

Very best wishes to you both. Do keep in touch and do ask any specific questions – there will be someone on here who will have the answer.

Mavis x

[brochoParticipant]

Hi Kerry no wonder you are scaredits so bewildering and frightening at first but it will get better The plasmacytoma can be treated with steroids initially to reduce it and then radiotherapy is amazing at getting rid of tumours , I dont know if thats appropriate for your partner but I am sure his doctors will be looking at the best and quickest treatment for him. The specialist nurse is a good person for you to talk to about his treatment and the helpline on this site is manned by qualified nurses only too glad to help. Dont be afraid to ask the doctors what their plans are and any other questions you have. I have had successful treatment on tumours on my spine with steroids and radiotherapy totally painless too. I am sure you will get lots of replies to yourpost this site is a godsend when you need support we will all be here to answer questions and just listen when you need a rant so dont hesitate to post . I hope things get easier very soon Keep your chin up it will get better Bridget

[eveParticipant]

Hi Kerry
Welcome to this site,i will not even try to tell you not to worry,but advise you to learn all you can and things will not seem so scary,ask for booklets at the hospital or phone Ellen who will send you some.

Blood clots not very nice but once treated and on going treatment for them during Chemo solves the problem.they can be part of any illness but more so with this Cancer.make sure he tells the doctors how much pain he is in,the rib fractures are very painful ,They will be doing lots of scans MRI CAT scans,plus full body exray,s because he is an in patient,he will have them a lot quicker,which always helps because of his discomfort.
Hope this is some help.treat it as a big learning curve,and it will not be long before it seems like normality in stead of scary.Eve

[BADGERParticipant]

Hello Kerry
So sorry to hear about Melvin it must have been such a shock as it is for us all I have been lucky not had bone damage but my kidneys have been badly damaged. This is such a good site for support help and advise and the myeloma help line can be invaluable they are so kind and informed
love to Melvin
Rgards Jo x

[tomParticipant]

Hi Kerry and Melvin

A warm welcome to the site and sorry it seems to have hit fast and hard, take it in that when they find what helps Melvyn everything will fall in place, keep srtong its an uphill fight.

Tom "Onwards and Upwards" xx

[CarolBradley1Participant]

Hello Kerry
Sorry you have both had to join us and that your having such a rotten time at present. I think everyone has said just about everything – thats the big thing about this site, having lovely people share their knowledge and practical advice is such a support.
Hope that the pain is now getting sorted out and that things are a bit calmer soon.
Love Carol xx

[keznmelParticipant]

Hi Mavis…Sorry for late reply.

Thank you for your message. I hope you are feeling well.
Melvin is also having bone strengthening infusions every 4 weeks…but he still has these new fractures. His levels seem to have spiked a little but not out of control. He is still in hospital on IV antibiotics and morphine but is having more movement now which is good.
It is such a complex form of cancer isn't it…just feel in constant limbo!

Keep in touch and thank you again. Love Kerry xx

[keznmelParticipant]

Thank you Bridget,

I hope you are feeling well. Yes, Melvin had radiotherapy for the plasmacytoma on the spine and is having infusions every 4 weeks….however, we are not sure what the next plan is now that he has multiple fractures. He is in hospital at the moment on Iv morphine and antibiotics and the Dr's are having a MDT meeting later today to discuss treatment options. Sooo much to take in!

Keep in touch Love Kerry x x

[keznmelParticipant]

Thank you everyone for your lovely kind thoughts and words of encouragement. It's such a tough time for us.

I hope this finds you all well. Please keep in touch x x x

[OutdoorsPaulParticipant]

Hi Kerry
Sounds like like you guys are are really strong, stick with it as people have said the medical team will have treatment options so just ask them thats really important.The more you ask the better informed you are.
take care:-D
Paul

[GillParticipant]

Sorry to see you here but a huge welcome

Gill x

[DaiCroParticipant]

Hi Kerry & Melvin,

I'm sorry but I missed your post for a while… it may sound strange, stupid even at this stage but while you will remain 'scared', hopefully at a much lower level than now, you will nor be 'frightened' for long.

It will not take long before things start settling down as you gain a better understanding of the what, why, when, and where etc of MM and this forum will act as a buffer for personal support, shared experience and information.

Stay positive, get Melvin to visualise each treatment working and see himself well and in reasonable good health, trust your medics, listen to your nurses, don't be scared to say 'I don't understand' or 'help' but always keep your eye on options and try to ensure that you are receiving the correct standard of care – this forum and the experiences of people ahead of you will help you to understand what that is.

'Welcome'… not to the world of MM but to this forum.

Regards

Dai.

[HelenParticipant]

Hi Paul
How are you doing? You must be close to sct now as I seem to remember you joining the site while I was in hospital having mine! Love Helen

[OutdoorsPaulParticipant]

Hi Helen
Well i had a hiccup or two en route,not yet made sct yet.My temp started to spike over new years and after.Ended up going into hospital for 3 weeks to have many tests run to see what was going on.In the end it seems the myeloma had come out of remisssion and come back.I was on the myeloma 11 trial,now off this and on PAD for a while.Feeling much better and getting back to my usual positive outdoor self.SCT and allograph remain in the treatment plan its one step at a time.We just got a puppy as well a border terrier called archie hes very cute!!.He will get plenty of runs on the moors and beaches so looking forward to that.
How are you doing I followed with interest your progress and thoughts.
cheers paul

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