[tony642Moderator]

Thanks for the reply Will,

I am really pleased to hear you are doing so well, I hoe it stays the same for you. Don`t forget that anytime yuo need a chat I would only be too happy to do so, just let me know.

Regards, Tony

[tony642Moderator]

Ice pops are good too!

[tony642Moderator]

Hi Welshwill,

I am one of the peer support volunteers. I was diagnosed with MM 3 years ago. I had complete kidney failure and 2 vertebral wedge fractures. I was disgnosed with MM and underwent 6 rounds of VTD treatemnt, which helped stabalise the condition. I was then offered ASCT which I decided to have as my prognosis was not good. The teatement is unpleasant, as is the isolation in hospital, but the outcome is that I am still here and relatively fit and well 2 years later. The cancer remains inactive and I am tested every 3 moths for signs of it coming back. I was told recently that if I had not had the ASCT I would not be here by now!

Having the treatment was a no brainer for me, but of course it has to be a personal choice. If there is anything else I can help with, please let me know.

Regards, Tony

[tony642Moderator]

Hi Fjudit

I am one of the peer support volunteers. I have only just seen yuor post, what is the sitiation with yuor mother now?

Regards, Tony

[tony642Moderator]

.

[tony642Moderator]

Hi Bradlyn,

I am one of the peer support volunteers. I had severe lower back pain for several weeks. A trip to A&E told me that I had strained muscles. However I later found out I was in complete kidney failure which was casuing the pain. I also had 2 vertrbal wedge which was giving me pain which was indescribable. I was again admitted to A&E and when they realised what was going on, I was admitted straight to ICU.

Although I was suspected of suffering from MM when they eventually took my pain seriously, a bone marrow biopsy proved it and I was able to begin treatment straight away. If you are having trouble getting diagnosed, I would suggest being very firm and insisting that they carry out tests, and not being fobbed off with comments such as you are just getting old as I was.

Regards, Tony

[tony642Moderator]

Hi Jogj, I am so sorry to hear about your mother. As a patient and at one time very close to what your mother is going through, I know how she must feel. Don`t forget that there is assistance for you such as grief counselling and preparing for the passing away of a loved one available from MacMillan Nurses, and there is also the Myeloma UK website help and support section.

I found that support and love from family and friends very comforting and I tried to look back on the good things that had happened in my life. Maybe you could try helping your mother to remember all the happy times and remind her of good memories!

Sometimes I didn`t want to talk! I just wanted someone to sit with me and hold my hand. Knowing that there was someone with me who loved me was very comforting. Sometimes, that is all I wanted, to be peaceful and just reflect on my life!

I sincerely hope that what ever time she has left, that it is peaceful and pain free and that she knows her family was close to her at the end.

Don`t forget to look after yourself, which is easy to forget to do!

Sincere regards, Tony

[tony642Moderator]

Hi Melaniet, I am one of the peer support volunteers. I was diagnosed with MM 3 years ago, but in different circumstances but I did not get any advanced warning of it and I collapsed at home. If he has some of the symptoms, even though I know you are scared that it might come back as positive for MM, please get him seen by your GP. If it is MM, then it is diagnosed, then the earlier the treatment can start and therefore a better outcome is more likely. I know there might be a temptation to put off getting tested as it might not be the outcome that you want to hear, but far better to deal with it now instead of waiting until what happened to me when I was blue lighted in to A&E.

I have had a Stem Cell Trasnplant and the cancer has now not been active for over 2 years. Although it is not a curable condition, it is treatable and many people go on to live for a lot of years with it. What is important in my opinion is to have a good positive attitude towards it (which I know is difficult in the eraly days after diagnosis, but you do eventually get your head arounfd it), and also the support of friends and family.

I sincerely hope that it is not MM, but if it is, don`t forget that there is hope!

[tony642Moderator]

HI Laura, I am one of the peer group volunteers. I was diagnosed with MM 3 years ago. It hit me like a ton of bricks, as it also did to my family. However, my medical team were fantastic, and even though I was very ill with multiple failures, and complete kidney dailure they got my cancer under control with 6 rounds of VTD drugs (Velcade, Thallidomide and Dexomethazone if you were not aware). I was then offered ASCT (Autologus Stem Cell Transplant, Autologus meaning that you harvest your own stem cells rather than having to have them donated by another person) which I elected to have due to the likely positive outcomes it can provide.

This teatment was also very succesful and I am now able to lead a normal life. The cancer has been inactive for over 2 years.

The word Cancer is awful and strikes the fear of God into you when you hear it, but is does not always mean it is a death sentance. With the right tretment, and I think with the right positive attitude, there are a lot of people who have lived for many years with the condition. Of course everybody is different, and there are no guarantees, but there is always hope! I found that the support of family and friends to be absolutely vital in me getting my head around things and putting them into perspective. It has also changed the way I view things and appreciate what is important to me.

I wish your father well and hope that he feels better soon.

Regards, Tony

[tony642Moderator]

Dear Chickenwing. I am one of the peer support group. I can only tell you of my experience. I was admitted to hospital after collapsing with unbelieveable back pain which turned out to be 2 vertebral wedge fractures. When they carried out investigations they found I was in complete kidney failure requiring immediate and constant dialysis. Furstth investigations identified that I had MM. It sounds like you have not had as bad an experience which i am glad about. I was initially told I had just days to live due to the state of my blood. However I was given a transfusion of 13 pints of blood which very much improved my condition. I obviously got over that initial problem and they extended the prognosis to 6 months. I had 6 rounds VTD which were very effective and the prognosis was again extended to 2 years. I elected to have SCT which I had 2 years ago last month. I am tested every 3 months and there is no sign of the MM coming back.

I can only tell you of my experience, and for me it was a no brainer to go ahead with the SCT as I was so ill and I was not ready to go, so was willing to do anything to make my life last longer. SCT treatment is not pleasant and you will probably lose your hair and get mucositis which is also not pleasant, but both of these side effects are only temporary, your hair will grow back!

Would I have it again knowing what I know now, yes I would as I would probably not be here now, or at least I would be very ill if I hadn`t. Would I have it again if it came back? Yes I would if it gave me further life expectancy.

However the choice is yours and I wish you well whatever you decide.

[Author]

Posts