My journey so far with myeloma has been.
Broke my neck getting out of bed July 2009. Diagnosed MM Aug 2009.
Put on CDT (I did get some PN mainly in the feet ? spongy foot I called it)
Had real problems getting enough Stem Cells for a SCT but finally got 2 mill ?just ? in Oct 2010
Had my SCT in Nov 2010 ? Out just in time for Christmas –
Started to relapse Jan 2013
Start 2nd line on the 15th Apr 2013 Velcade and Dex (no Cyclo?)
Thanks for the info one all.
Kindest regards ? vasbyte
David
I am so pleased for you, I know you like my wife, will feel all the responsibility now but the Consultant?s anger should give you one very, very big clue to the course you should steer.
Be absolutely bloody minded about possible infections. Make sure everything is spotless use detol ? germ killer type cleaners etc? Do not allow anybody who has had a cold or any sort of bug in the house. My wife insisted nobody but nobody should touch me and conversations were held at double arms length. YOU cannot be too careful at this stage.
It is hard but it is doable and people quickly understand and will support you.
All the very best of luck Jean – you and Frank deserve it.
Kindest regards ? Vasbyte
David
Hi Eve, I would be staggered by that reply as well.
In Taunton we generally do not see the same Consultant consecutively i.e. twice in a row, unless the Consultant has specifically asked to see you. I consider it a terrible system, sometimes I feel I am on factory roller feed table. I am going along to the inevitable end and my card is just being stamped on the way! I might make some diversions on that route but they are all just ticking the boxes, having said that I really cannot complain about my treatment, other that it is so impersonal. I certainly am spoken to civilly, kindly and with some respect. But I think it is a trait in the medial profession if they feel you are trying to ?do their job? they can get uppity.
Kindest regards ? vasbyte
David
I am getting a little confused; you guys are way ahead of me when it comes to treatments. I have my next appointment with a Consultant on Friday 5th. At my last last consultation I was told all being well I would probably move on to Velcade with Dex.
I have been getting a fair amount of bone pain and am taking Tramadol and Paracetamol for that. Last Wed/Thu I ended up in Medical Assessment Unit, at Musgrove Hospital because of the pain I was in, which I thought was bone pain. It turned out that I have an infection in my right lung and I now have two types of antibiotics for that. My MRI scan showed that I have 5/6 bone lesions spread through my body, two of which are either side of my chest. All in all I have not been a happy Easter Bunny for the last week or more.
The reason for my post is that I am getting mixed information about Velcade, if I am still allowed to take it of course? I picked up the impression early on that Velcade had a good reputation and could give you at least a year remission. Recent post have tended to be a bit more cautious. I quote my fountain of Knowledge Eve, what would we do without her, [b][i]I think they are finding Velcade is excellent while you are on it, but the Myeloma just comes back, they need trials as a maintenance drug. [/i][/b] I know things are ?individual? but as a general statement your thoughts on Velcade would be very much appreciated. By the way Dai I intend to ask about MU5 trial thanks for the heads up on that.
Kindest regards to all ? vasbyte
David
I have been taking Bisphosphonates in the shape of Loron since July 2009, two tablets every night. When I first started taking Loron I was told I would be on it for 2 years max because the risk of ONJ was high after this point. It turned out that the 2 year dead line was because nobody had carried out any clinical trials with people taking the tablet for over 2 years!
The last time I went to the dentist, about 6 months ago for a filling, there was certainly a lot more care taken not to disturb any other teeth, it went ok.
Since that time I have been informed I can have anything but an extraction done. If I want an extraction I have to stop taking Loron for one month before and 3 months after.
Kindest regards – vasbyte
David
That, Peter, is really excellent news. Well done. 😎
Kindest regards ? vasbyte
David
Getting back on topic 😀 😀
When I was originally diagnosed in July 2009 I asked for a prognosis. I specifically said I did not want any bull sh*t I had things I must do for my wife and I want to know what time I realistically had left. What is more I wanted only useful time, time I could do things in and not time spent in a stupor. The answer came back max 3 years, you might get longer but you have already had Myeloma for 2 years! My wife, Sister-in-Law and her husband were there at the time. I joined this site at about that time.
I decided that I was not going to be the ?Elephant in the room?. I was going to talk about MY TERMINAL ILLNESS and have a laugh and a joke as well. I do not go on about symptoms when asked how I am, my stock reply has and is ?I am still standing?, very few are really interested in the nitty gritty, and if they really want to know, and are not just being polite, I tell them but that is rare. One of the first jokes I started was about building my own coffin; this was natural because I have always been a bit of a DIY man. We had some great laughs about coffin bottoms dropping out, hands falling out on the shoulders of the Bearers even the grandchildren got involved in Granddad?s final journey.
It was such an ice breaker that I decided to actually make my own coffin. The family are involved, my son is doing the artwork for the murals on the sides, my daughter has made a lovely family tree picture (like apples on a tree) for the top and my wife has made a beautiful handmade cushion for my head with a cross stitch picture of my two dogs on it. The Grandchildren are doing Hand Labels (like you would see on an old trunk) with messages to stick on the coffin at the service. However the whole thing has snowballed and everybody now knows about my coffin and it is a great source of merriment amongst friends and family alike. I know we all cannot do this but I really think it was the best thing I could have done and I am so pleased with the result. I am treated like a human being, I do not see people whispering in corners I am asked how the coffin is coming on in a joking manner and there simply is not an elephant anywhere to be seen. I even had an offer from a bricklayer friend to make me one in the best bricks.
Just one example before I close this long missive. Last week my family were all sitting down for Sunday dinner. My Grandson inquired what material I was going to use on the inside of my coffin, I have started the final build. Red leather I replied ? Nannies? favourite colour. ?You are going out in style then? was the reply. The conversation then degenerated into jokes about using it as a carriage with horses and the Grandchildren riding atop to the grave which I will not go into.
I love elephants and we have over 30 ornamental ones we have collected over the years from all around the world. So much so that I decided that the background colour of my coffin would be Ivory. But there are no ?Elephants? in my life. Now there is a nice contradiction to finish on!
Kindest regards to all ? Vasbyte
David
p.s. Although I expect to finish my coffin by the end of April I am not planning on using it for some time yet.
You are right Ted about communication. I noted that, if a little surprised, the Haematologist consultant asked me what went on at the radiotherapy consultation. I had expected him to know! He did not disagree with the course I had taken but on the other hand he did not say he agreed, which is slightly odd looking back on it. I think I will bring it up at my next consultation, but it might not be with him. At the Beacon Centre Taunton Somerset we see a random selection of consultants, it could be anyone of 5 (I think) people. Sometimes, it can be a little disconcerting to see them hastily reading the notes the last one left. Again, sometimes, I get the feeling I am not so much being cared for as passed along a chain.
Kindest regards ? Vasbyte
David
Hi Norma, Welcome to the forum; it is a funny old place not a place you want to be but on the other hand you can meet some real nice people and make some good friends. I wish you well on your appointment Monday.
I think it is going to be a long night for me again. I have just come off Tramadol, which makes you sleep for the world, and I think I am in withdrawal. Last night I tried to fight it and just ended up keeping the wife awake. Tonight I thought I would come and do some work on my computer until the eyelids closed and then sneak into bed before they opened again, and I wake the wife LOL
I have Myeloma G (the bog standard sort) and was diagnosed in 2009. I am just relapsing from my Stem Cell Transplant (SCT) which was in Dec 2010. But all in all I have had a smooth path so far. Unfortunately, I have recently been diagnosed with Advanced Prostate Cancer. I am having Hormone Therapy Treatment (HTT) for that and it is that which is keeping me awake. I seem to oscillate between Hot Flushes (now I know what you ladies suffer) and something I call creeping skin, it is like your whole skin has little bugs under it! As you have been reading our posts for a year you probably already know that LOL!
Anyway back to the job in hand. We will look forward to hearing more from you.
Kindest regards ? Vasbyte
David
This is an interesting debate – thanks Ted. I have MMG and had the usual treatments ending in a SCT in Dec 2010. My MM is now relapsing and subject to the results of a full body MRI scan I am moving onto second line treatment, Velcade and Dex (oh Happy Days). The appointment to decide this is in 3 weeks time to the day.
6 months ago I was diagnosed with advanced Prostate Cancer. At the first Urology meeting I was informed that I would have Hormone Therapy Treatment with 35 Doses of Radiotherapy and an appointment was made for me to see the radiotherapy consultant. This meeting was not as straight forward as I thought it would be! She painted a very black picture of 35 doses of Radiotherapy which would hit the bowel area as well as the prostate and whilst offering the treatment was advising against it. Her reasoning was that I already had MM and that the problems with radiotherapy would not mix well with my trying to survive MM for any period of time. The logic seemed to be I had two terminal cancers one of which was going to kill me and therefore to get the longest time frame I should stick with just the MM treatment and have the hormone therapy treatment at this stage, she added that I could have the Radiotherapy treatment in 18 month to two years time ? if needed! I made a provisional decision to opt out of radiotherapy. I then spoke to my GP, who I am on very good terms, and he agreed that she was being realistic in looking at the treatment for both Cancers and felt her advice was right.
Kindest regards ? vasbyte
David
A trip to Greece wow 😎 can I come in the luggage. I also love the Lakes, did some walking there many years ago ? not a Wainwright mind you!
That all sounds great to me Andy, considering your start point and the journey you have had.
All the very best on your holidays ? enjoy them.
Kindest regards ? vasbyte – David
Hi Tina, Have you got back your taste buds?
The plan most seem to use is to go for very small portions of your favourite food on small plates and then gradually increase the quantitiy of food.
I got my taste buds back on Christmas Day after my SCT in Nov/Dec 2010. But I did not have a great desire to eat. Unfortunately I cannot remember when my desire to have a Bacon sandwich returned but it was some time after the SCT by that I am talking 6 to 9 months. I well remember Mo having to bin plates of lovely food in the early days.
I hope your keeping well and staying well clear of any ?bugs?. Kindest regards – vasbyte
David
I think Frank's attitude to infection is dead right. You cannot and I stress CANNOT be too careful for at least the first 3 months after a SCT.
Give him my best wishes for a safe and successful journey.
Kindest regards – vasbyte
David
Silly little child?s game really 😀 I always say that when I lose, my wife says!
The object is to pinch and punch (lightly off course – unless you have just had a row – he he) your partner on the first of the month before she/he does it to you. It can be anytime after midnight on the last day of the month. You have to say at the time "Pinch punch first of the month – no returns" And I have always understood that it had to be before 12 midday to count although this rule does not apply everywhere, see Dai's post. Your partner can retaliate up until you say "no returns" so it has to be done and said real quick otherwise they can get in with their "Pinch Punch" and you lose. Sometimes the wife and I have chased each other around the bedroom trying "to complete" – Can be real fun!!!!!!;-)
Kindest regards – Vasbyte
David
Well spotted Tina. I jast loove an idit buton:-D
Kindest regards – vasbte
David
p.s. We have been married 50 years and I cannot remember ever not playing Pinch Punch. It has helped get us back together on many occasions!