Dear Scotty,
Sorry to bother you again, but I haven't received any email from you with a link…
Best,
Eva
Dear Scotty,
Thanks for sending the link, but it hasn't arrived at my email address. It is evayouren@lineone.net
I'm ok at the moment. Was dx in May 2008 and had CDT for about
three months, then an autologous transplant. I was in complete remission before the transplant.
After the transplant my paraproteins went up for three months then returned to zero and stayed that way for a couple of years. At the two year mark after transplant, there was a faint band of paraprotein, suggesting something was up. Six months later my left arm shattered very painfully due to lots of myeloma cells in the humerus. I had an operation with pins put in and I can use the arm now.I went for a second opinion to the London Oncology Centre with Prof Ray Powles. He did a pet scan and verified that I had over 70% plasma cells and that my myeloma had evolved, so I was becoming an oligo-secretor( extremely low m-spike).My remission was clearly over.
I had suspected that my arm might go and that I was becoming a very low secretor but my Scottish consultant in Edinburgh said this was highly unlikely and wasn't prepared to do a freelite test. He also sent emails to my other doctors saying that the pains in my arm had nothing to do with myeloma. This stopped me from getting help just before my arm shattered, which I must say was just as painful as childbirth and happened in the Highlands so I had to go to hospital in a helicopter while screaming in pain. They couldn't give me pain relief as there are rules that you have to administer it via a vein and the paramedics couldn't get a vein to appear.
Anyway, that's when I decided to go for a second opinion to London. Prof Powles verified that my suspicions about becoming a very low secretor were right. He agreed to put me on Thal and Dex again because that's what I wanted. I've had freelite tests to monitor the situation. I was on both for eight and a half months and bone marrow biopsies showed plasma cells were diminishing. I was taken off dex as my face looked like a gerbil and I had added a lot of weight. We continued with the Thal a couple of months longer. I seem to have reached a complete response. I am still on Thal 100mg a day as consolidation and we send my bloods to London at intervals. My insurance is paying as the Oncologoy Centre is private.
I am still fat; dieting quite stringently for two months has led to a loss of just two pounds! I think the body has adjusted to the lower calorie intake. I have always been very slim so this is difficult for me. Flying to London is not easy as we live in the Highlands most of the time and I have to stay with friends when in London. It distresses people to see me struggling with the effects of chemo so I find that embarrassing. The first time I went to London, Prof Powles insisted I stayed for eight weeks. We couldn't afford a hotel and I probably traumatised the friend I stayed with, especially when going through dex withrawal symptoms each cycle.I am not so keen on seeing the Edinburgh consultant again even though we have a flat in Edinburgh. He would get quite angry when I asked for a freelite test or said I might be becoming a low secretor. We can't sell our house at the moment because of the economy and I'm probably too ill to arrange it, so I will try to continue to fly to London every three months and look for friends to stay with as long as I can cope.
I have no idea how you are – perhaps once I get back onto the Under Fifties site I'll find out.
Very best wishes,
Eva
Dear Michelle,
Devastated to hear this – thinking of your and your family,
Eva
Dear Scotty,
Hi, this is Eva. I joinged the under fifty group a couple of years ago and have lost the link. Is it possible to get back in? My email is evayouren@lineone.net
Best,
Eva
Dear Dai,
I must apologise for one thing – the hypothyroidism was from extended use of Thalidomide, not dex. Let's put it down to chemo brain…
Eva
Hi Dai – this is Eva again. I've just remembered some other side effects with dex. I've had hair loss and absolute confirmation that it was the dex because when I stopped being on it I got new hair growth even though I was on other meds. I don't think hair loss happens to everyone.
Another side effect is that muscles atrophy or diminish and that's different from the myopathy I described in my previous post.
It's also possible to get something called hypothyroidism, where your thyroid gland isn't working optimally and you need to take meds to correct it. The test for it can come with an ordinary blood test if you ask for thyroid function to be assessed. The parameter involved is called TSH and when the results come in you can check whether your TSH levels are in the normal range. I had hypothyroidism while I was on the dex and I felt much better when I was prescribed 'Levothyroxine.' After I was taken off the dex it took a few weeks and then my throid levels returned to normal.I think these problems are more likely to occur after prolonged use of dex.
Best,
Eva
Dear Dai,
I've been on dex for over eight and a half months since a bad relapse. I added weight, especially in the face, stomach area and on the top of my back so I look a bit hunched. I've also experienced the lip tingling, though I've been on Thalidomide at the same time so I'm not sure what's causing what.
I've felt a bit restless on the dex, occasionally bordering on anxious. Coming off the dex in each cycle has been a real problem. The first day off, I've been a bit tired, but ok. By the second day I've always slowed down significantly. The problem has been compounded as the days go by, until I've been unable to walk more than a few metres, and stairs have been practically impossible. I think I'm a similar age to you and used to be very fit. There were some days when I just had to retire to bed in disgust as I couldn't do anything. After about six days on no dex in the cycle, there'd be a magic moment in the evening when my adrenal gland would start working more efficiently again and I'd be able to do a bit more. Of course, it would be almost time to take my next dose of dex….
I had one really awful episode with the dex after being on it for about four or five months. My husband had to go away to Edinburgh on the train – we live in the Highlands – and I decided to go with him since I was afraid to be on my own as I felt rather strange. When the train pulled in I had to climb onto it as it's a very low platform ( we live in a railway station). I was in a crouching position just inside the train and suddenly realised I couldn't get up. My body just wouldn't do it. The train was about to leave and my husband was behind me with a suitcase and bags. I ended up crawling to a seat on all fours and then got helped up. Over the next few days I had the same problem each time I tried to get into a cab, and I couldn't even get up off the loo on my own. I could only walk a few steps very laboriously. I found out I was suffering from dex induced myopathy – a loss of muscle control. I contacted the Prof in London who was treating me since my relapse and he told me to stop taking dex immediately. I had a dex holiday for about ten days and then restarted at a lower dose. The myopathy went away but once I restarted I still had the problems with dex withdrawal. I've been taken off the dex about eight weeks ago because I was responsive to the treatment and now I'm just on the Thal. I'm still very fatigued, struggling with the weight I've added, and have chemo brain, but it's easier without the dex. Of course, as soon as my numbers go in the wrong direction I expect I'll be back on the dex.
Dai, I wish you the best with your treatment and hope the dex side effects are manageable.
Eva
Dear Joe,
My mother died of cancer when I was 21. We were very close. I could not imagine life without her. I am now middle aged and have mm myself. I was able to go on and have a fulfilling life eventually. If you'd like to have a chat send me an email and we can talk over the phone. My email is evayouren@lineone.net
Dear Penny,
I also live in the Highlands and I've had a transplant. If you'd like to speak to me please email me on evayouren@lineone.net and we can arrange to phone each other.
I'd be happy to tell you about the experience.
Eva
Dear Ian,
Eva Here. I've read about the 'diminishing benefits'principle many times so there must be some truth in it.
However, I did find a study once which unfortunately I didn't make a note of, which gave stats that were a bit more encouraging. They suggested that more people have diminishing returns, some get the same result, and that there is a reasonably sized subgroup that does even a bit better. I have no idea whether this study was valid.
Eva
Hi Min,
Am very happy to answer your questions. Would you rather email me direct?
My email is in one of the posts ; evayouren@lineone.net.
Best,
Eva
Hi Nigel,
Eva here from Scotland. I think some of the older drugs are a bit cheaper: for example, Thal is cheaper than Rev. I'm sure that Nice will fight to save money. In the end treatments become available when they've been used in other countries for ages and it becomes obvious that we are very backward in funding them.
One of my neighbours who was a surgeon and a psychiatrist died recently of kidney cancer. She was refused a drug that can be accessed in other countries. Of course, she would have died anyway but she might have lasted longer.
In the US people who have very good insurance might get better treatment and those who don't and have very little money can benefit from various schemes to assist them. There is a group of people in the middle who are really struggling though and who have to come up with massive 'co-pays' each month. Some of them have had to sell their homes or use up their childrens' inheritance. I've had medical insurance here for at least ten years. I had a chat with my insurance company and told them about my myeloma. They are very very keen for me to use the NHS for all treatments. When I gave some reasons for going private, at least at times, they said they were prepared to fund one second opinion in London as I live in a more sparsely populated area.This was for the consultation, and not for treatment. The person in charge of my 'case' implied that any attempt to get treatment on the policy would be met by very very rigorous procedures. In the end I was told that there would have to be no NHS treatment available. I always thought that insurance gave us an entitlement to private treatment if that was our choice. I've been paying over a hundred pounds a month for my policy for many years and have continued it even though I've had to stop working. I think it's unfortunate that an insurance company is determined to not lose any money even if someone has a condition as complex as myeloma. Good luck with your Velcade treatment – I haven't had Velcade yet as I was diagnosed almost three years ago.
Best,
Eva
Dear Dai,
I'm sorry about your news. I do feel it's premature to be re-evaluating your prognosis. There are so many patterns of response and relapse. I don't know how many myeloma blogs and case histories you've read. There are people who actually 'fail' an ASCT and then go on to live ten years. Admittedly, they respond to other myeloma drugs, on their own or in different combinations.
What matters is that the disease in brought under control and that the 'cost' of doing so doesn't kill you. Some people have very long remissions; others require a gentle 'drip feed' of drugs, and yet others go on to achieve stable disease or even a remission after a new aggressive chemo. I'm not an expert, but my guess is that if you're reasonably fit and haven't exhausted every treatment option in the book, then there's many reasons to be optimistic. Another thing that happens to some MM patients is that after a particular therapy they have a relapse but then their disease develops more slowly after reaching a certain level. My original onc told me that it is difficult to predict which treatment will give the longest remission. It might be the second or third line treatment. What matters is that your myeloma doesn't become totally unresponsive to everything and that you are well enough to withstand treatment. My advice is that you should eat well, exercise and have lots of plans for the future. Also ( easier said than done), try to live in the NOW and focus on what potentials you've got on a daily basis. From what I can tell, I think you seem to be a person with many talents and with much to contribute to those around you.
Best,
Eva
Dear Sylvia,
A quick question. I was interested that your onc will give you Velcade via injection. Which part of the UK are you in?
I'm interested in subcataneous delivery of velcade because whenever I've had a cannula put in it has always been very painful. The pain has persisted for the entire time I've had the cannula in.
Best wishes,
Eva
Hi David,
My paraproteins were zero before the SCT. Afterwards they went up to 3G/L which was considered quite alarming by my onc. They stayed at that level for two months and then began a decline over the next three months to zero. We don't know what caused the blip. I had a very bad fall in the week after I came home from the SCT. Some people believe that jolts can cause a rise in paraprotein. Some people also get some pp after the SCT which then can go down again.
Best,
Eva
