Hi Susan,
I had problems with my eyes right from the start of my treatment and after the SCT I found my sight was deteriorating very quickly but the hospital kept telling me everything was alright and it wasn't the treatment affecting them . I spoke to my GP who referred me to the eye hospital, they found I had cataracts in both eyes and because I was very short sighted they recommended replacing the lenses. I have had both eyes done within a month and can now see perfectly after wearing glasses all my life I no longer need them except for reading. It was a bit awkward for the month when I had one done I had to take a lens out of my glasses to get by, I didn't wear them out like that though. lol I would recommend this operation to anyone who has cataracts.
Gill x
Hi Shelley,
I don't often post on this site but regularly keep up with the topics. I felt I had to reply to your post as like you I was 42 when I was diagnosed with MGUS although it had been picked up 3 years earlier but was just put down to a long term virus until one doctor decided to do a bone marrow test. The only way it affected me was severe bone pain, tiredness and frequent chest infections.I regularly attended The Christie hospital for 17 years for them to keep an eye on me, a couple of times over the years I was borderline for treatment but never had any until I started to feel unwell and extremely tired in May 2010 my GP referred me back to The Christie as my next appointment wasn't due and it was all go from there it had developed into mm. I had 4 CDT treatments before having my STC in January 2012. I didn't have a good reaction to the SCT and was quite ill for several months, I thought I would never get better. However, I am back running my business and feel better than I have in years, the doctors are surprised that I have had a full remission given the length of time I had MGUS and my reaction to the SCT. I am now 62 and have not been ill for some time although a number of my staff have had colds and stomach upsets I did not get them. Also MGUS does not always develop into myeloma. I hope this helps you and puts your mind at rest.
Gill x
Hi Bev,
It is a very worrying time and we all want to get the best possible treatment,if you read anyone's experience on this site though the majority have had excellent care from their local hospital. I attend The Christie in Manchester and cannot recommend it highly enough. Dr Jim Cavet and his team are very thorough and provide excellent care. The Haematology department has an outpatients and day ward for treatment there is also a specialist HTU ward where you go if you have an infection or for your transplant. A new building is in the process of being built to house the Haematology, outpatients, day unit and wards. I am not sure when this will be finished but I expect within a few months.
Good luck I hope this helps
Gill x
This is great news I am sure you will have a fantastic cruise. I had a cruise when I got the all clear and enjoyed every second. As a Royalties Gold customer with RBS I have a travel insurance policy as part of the package. They say to ring if you have health issues so I did and it only cost me £129 for a full 12 months cover. This covers my Myeloma, Asthma and high blood pressure, I think the insurance company that supplies RBS policies is Defaqto, it might be worth trying them. Good luck
Hi Anthony
That is great news I am so pleased for you. i know how difficult it is when your sight is not good. I went to the eye hospital a couple of weeks ago and my cataracts have been confirmed and I have been referred for surgery. I have been told that not only will they remove the cataracts but that they will correct my vision and I should no longer need glasses. This is going to be very strange as I have worn them for 52 years. I have been told that the first eye will be done in 2/3 months. I just hope they do the second one quickly or things are going to look very lopsided 🙂 I struggle with the light I may try the campling light myself.
Good luck with the treatment.
Gill x
Hi Anthony,
I think I read on another post you have paraprotein anaemia, this could be the cause of your blurred vision as it is a common symptom of anaemia.
I too had blurred vision before I started treatment in July 2011. I went to the opticians who was puzzled and could not explain it, the blurred vision fluctuated sometimes it was really bad and other times only slight. This could have been because of the anaemia although my optician did not pick it up.
After my SCT in December 2011 my eye sight deteriorated and I have had to change my glasses twice since then, my vision deteriorated by 50% in one eye and 40% in the other when I first changed them and there was no mention of cataracts. As they were still deteriorating I asked my doctor to refer me to the eye hospital which she did and I have been diagnosed with cataracts. My next appointment is in a couple of weeks and I will find out if and when I am having them removed.
I thought that it was the treatment that caused the cataracts but I have been told that I was predisposed to getting them but the treatment has just speeded up the process.
I am fit and well after my SCT in January 2012 and am in complete remission and now I know what the problem is and that it can be sorted I am just very pleased that the treatment was successful.
Gill x
I am really sorry to hear your news, I wish I could say something better but words are difficult at a time like this. I do not contribute often to the site but regularly read the posts and followed Pauls.
Take care love Gill
Hi Eliz,
Thank you for your kind thoughts, I am sure I will enjoy my holiday I am really looking forward to it.
Gill x
Hi Charlie,
Everyone is different when it comes to Myeloma so although they could not delay my treatment they may be able to delay yours. I had been attending The Chrisite for 17 years for regular checkups. with the MGus/ smouldering myeloma I used to get more infections than anyone else and felt tired more easily but that was all really. But I went to my GP before my appointment in 2010 because I felt so ill and just fell asleep everytime I sat down, she did a blood test on the Monday and rang me on the Wenesday saying she had referred me back to Christies. Christies rang the same day and I had an appointment on the Friday. The results of the blood tests had changed considerably since the Monday and they said it was progressing so rapidly they didn't think delaying treatment would be a good idea.
I was quite poorly in hospital constantly sick and I did not eat anything at all for about about a month which left me very weak. I had a wheelchair for a couple of months for shopping trips etc when I first went home. I felt much better out of hospital although I have been back in a couple of times. The last time for almost 3 weeks because I had fungus in my lungs, they never found out what it was but it has shrunk and I feel a lot better now. It has left me with a bit of reactive arthritis but I think that is getting better now.
As I said it is six months since my sct and I am now doing some cleaning, and cooking again I am also going to work for a few hours a couple of times a week. Life is getting back to normal and food is beginning to taste good again which is great. Once I get rid of the arthhritis I will be fitter than I have been in years.
I am going on a cruise to the Norwegian Fjiords, Denmark and Germany. I am so looking forward to it as I had to cancel my last holiday.
I have price up Insurance with World Wide Travel Insurance which I got off this site and they will insure me and my husband without insuring for exisitng conditions for £61.00 for both myself and my husband. But I am going to ring to see exactly what is covered tomorrow.
Just take it easy and don't try to do too much too soonn
Gill x
Hi Charlie,
It is a personal choice whether you go for the trial or not but for me it worked and I would do it again even though I had a bad time.
I started on the Myeloma X1 trial last July the day before my 60th birthday, I asked if I could delay treatment for a week or two but was told the treatment couldn't wait.
I got randomised for CTD and I think I had every side effect you could think of, by the end of the fourth cycle I found it difficult to even climb upstairs I had to go on my hands and knees. Fortunately I was told that I didn't need any more treatment until my stem cell transplant.
I had my stem cell transplant in January and once again got every side effect going and am only just getting back to normal. I have had a couple of serious infections which have now cleared up but it was all worth while as I was told by my colsultant yesterday that Iam in complete remission. He said they were really pleased and surprised as they did not expect it for me as I had MGUS and smoldering myeloma for 17 years and other medical conditions and also becuase I have been ill with chest and stomach infections. I have had my ups and downs during treatment and been quite poorly but believe me it is all worh it. I feel better than I have for a very long time.
They usually randomise you for maintainance treatment at three months but because I was not well they only randomised me last week 6 months after my transplant. I did not get any treatment this time which I am grateful for because I seem to get every side effect going.
I am actually going on holiday in a few weeks and know I will be able to enjoy it. My first holiday in 2 years.
Good Luck
Gill x
You have given me hope to as it seems so long since I have had a holiday. I had my sct in January and have had a very good partial remission. Unfortunately I have had a problem with fungus in my lungs which floored me and I spent three weeks in hospital, I am home now still not better but hopefully getting there.
We have decided to have a week in a caravan in cornwall, just in case I get another infection. We decided on a caravan because we can come and go as we please. Hopefully next year I will be up to a cruise or at least a holiday abroad.We had to cancel a cruise last year because I had to start treatment.
I am home after almost three weeks in hospital, I am still no better and they cannot find the cause of the fungus which is a concern. I am still on antibiotics which aren't working and am having another CT scan on 10th July. The hope is that the nodules have shrunk which shows that the antibiotics are working or that they have grown enough so I can have a biopsy.
I have been having problems with my eyes since the transplant and the consultantant told me to get my eyes tested. I only had them tested in November but had them checked again. I knew things were bad but I wasn't prepared to know that my eyes have deteriorated 50% since the transplant. I even got a special discount off my lenses as they are so strong. I have to wait till 4th July for my new specs but hopefully I will stop getting headaches and feeling dizzy.
Hope everything goes well for you Sue, my stomach problems seem a lot better on this low fibre diet and with the tablets I am on so I have said I don't need any further investigations.
Gill x
I am very sorry to hear about your mum she will be sadly missed and although I don't post very often I always looked for Bridgets posts as she always had such good advice and a very good sense of humour. I have been wondering about her over the past few weeks as I hadn't noticed anything from her.
I will be thinking of Bridget,you and your family on 4th July.
Gill x
Hi Susan,
How did you go on at the clinic with the results of your tests? I came in to clinic for a scan over two weeks ago and because my temperature was high they kept me. I have swelling in the colon so I had a Sigmoidoscopy which didn't show much. After I had been in for a week they re-looked at the CTC scan and noticed that I have nodules in my lung so they have been working on the theory I have a lung fungal infection but nothing is working on it. I am waiting now to have a biopsy to see if they can identify it. only another 4 days and I will have been in as long as my stc.I am on a low fibre diet and this seems to help the soreness so I will continue with it at home.
Love Gill 20
That is fantastic new David,I'm sorry about your chesty cough, sure you will be fighting fit again in s couple of days.
As you said bite down and hold on
Gill x
