[alicenorthParticipant]

Jet

I am so sad and upset to hear this awful news. I followed Wendy’s blog and was aware that she hadn’t posted for a while. I had thought of her recently and wondered how she was doing. I had always admired how she still got on life, enjoying new adventures. I am glad you and she were able to do that. Wendy was a wonderful writer. She had that easy knack of seemingly effortless writing even when it was probably so very difficult for her.  I shall miss that immensely.

Thank you for letting us know, Jet. I am so very sorry that you have lost a dear friend. My very best wishes to you. Take very good care of yourself.

Tracey x

[alicenorthParticipant]

Hi Robert, I am currently on cycle 6 of VCD, after relapsing.

How wouldcyou describe the pain you are experiencing?

I’ve had pain in the back of both calves and knees intermittently but over the past few weeks, mainly in the back of my right calf and almost permanently. I’ve never thought that it might be peripheral neuropathy though. I assumed it was an issue with my muscles as a result of the steroids. I’ve always assumed that PN was a pins and needles/burning effect in the fingers and toes. I could very well be wrong though.

At times it’s like a cramping pain, other times, a burning pain. Whilst on steroids, I’ve had terrible fluid retention which isn t always helped by diuretics. However, when they do work at getting the fluid off my legs, the pain in my calf definitely improves.

I’ve just started taking a magnesium supplement to see if this helps. Also, recently, throughout the day, I’ve used ‘Biofreeze’ pain relieving roll-on over the affected areas and massage it in. It’s painful to use but it does give some relief, especially at night. Hope this helps!

[alicenorthParticipant]

Hi Amanda

i am 46 and was diagnosed 4 years ago. I had 6 cycles of CTD and reached complete response. I have delayed having a SCT although I did have my stem cells collected. I had to push for this option though. I think I made the right choice. But without a cytogenetic analysis of my bone marrow, I didn’t know if I was high risk or not so it was a bit of a gamble. I have a friend who was diagnosed with CML a couple of years before me. Her advice to me was that you have to take responsibility for your own health and push to get what’s right for you.  Good luck!

[alicenorthParticipant]

I think it’s the steroids that cause the sensitivity to sunlight. I would err on the side of caution and avoid any unnecessary chemicals whilst on treatment. Absolutely nothing wrong in your mum still wanting to look her best. One thing though, since being in remission and having various treatments at beauty salons, I’ve had some problems when completing a new client health questionnaire. As soon as they know you have cancer, they don’t want to carry out certain treatments until they have a letter from a doctor stating it is safe to do so. It’s all to do with their insurance. I felt embarrassed and frivolous asking my male 50+ doctor for such a letter. However, he was very sweet and said something to the effect that it’s important to do those things that make you feel good psychologically and was very happy to write such a letter.

[alicenorthParticipant]

My understanding from talking to one of the myeloma UK nurses today is that although the IMWG is highly respected in the UK, the new guidelines are unlikely to come into practice with immediate effect. More likely, they will filter through over the next year or so. For this reason, there is no reference to the new guidelines in the news section of this website as it was apparently felt that it would cause some confusion to do so. However, this stance may change.

[alicenorthParticipant]

Hi Helen
I’ve just read your post about your diagnosis of asymptomatic myeloma rather than MGUS. I’m not a doctor, but If your paraprotein level is 8g/l rather than d/l, I’m struggling to understand why you are not MGUS, in view of your other blood results. Have you asked for a second opinion? Maybe talk to your GP about it?

Best wishes
Alice

[alicenorthParticipant]

That’s very interesting, Michelle and congratulations! I’ve heard of pp continuing to drop in the months after SCT, but not after such a long period as yours!

My situation is that I achieved a complete response after 6 cycles of CTD. I didn’t have SCT and until 3 months ago had been in CR for over 3 years. However, my last two blood tests have shown a trace of protein although light chains are still normal. Obviously, I am now worried that this is the start of the inevitable relapse. My consultant said, however, that this might not necessarily be the case. Even in complete response, the myeloma is still there, just well hidden. There is a certain level below which testing equipment cannot pick it up and just like normal blood fluctuations, the trace reading could disappear again, going back down below the level that the lab cannot detect.

May your complete response continue – keep eating the blueberries! 🙂

• This reply was modified 9 years, 6 months ago by  alicenorth.

[alicenorthParticipant]

Hi Tom

Are you absolutely certain about the pain? I only ask because I’ve read your blog previously and you mentioned how you start to feel pains, real or imagined as you come up to your hospital appts. Are you coming up for a review by chance? I’m not trying to make light of the situation because I absolutely know what it’s like to imagine all kinds of symptoms as the time comes round for bloods.

I don’t have bone issues so can’t offer any advice. You’re only option, I guess, is to wait until your next appt or get an earlier one. One way or another, it’s a shitty waiting game. Are you feeling physically okay otherwise?

A

[alicenorthParticipant]

Always a bugger, I find, when blood tests follow a good week of drinking fine wine 🙁 ah well, such is life!

[alicenorthParticipant]

Hi Emma

I’m not as young as you – I’m in my mid-forties. Before diagnosis 3.5 years ago, I was working full-time. I was subsequently signed off by my GP and have not returned to work since. I haven’t had an SCT because of other complications, but I managed to achieve remission on frontline treatment. Although physically I’m okay (am fortunate not to have bone issues)this diagnosis has taken its toll on my cognitive abilities and my mental health. I also have an 8 year old daughter to care for. I remember being very keen to get back to work as soon as possible after my treatment ended because I wanted to regain a sense of normality. Maybe it was also a form of denial in having myeloma. However, I found that once I’d achieved remission, the anxiety about when it would come back kicked in massively and set off a whole new set of problems.

Financially, I’ve been very fortunate. I received full pay for the first six months before moving on to permanent health insurance, which was a benefit within my terms of employment. This is received in conjunction with ESA which together, make up a certain percentage of my former salary. Therefore, I’ve experienced the claims process in both the private and public sector. My experience with ATOS has been, on the whole, without issues. They reassess me every six months. There is a now a section specifically related to cancer, which can be signed off by the GP, avoiding the lengthy form filling from previous times.

My employer, like yours, has largely been supportive. But they no longer pay me. A major insurance company reimburses them. Therefore, I have to deal with the insurance company as they regularly reassess me, which involves more form filling and telephone interviews which are often quite stressful. Obviously, they are very keen to get me back into work so they don’t have to pay. I’m not saying I’ll never work again, but currently, I’m in a limbo position. The plan is for me to have an SCT on relapse (I also have amyloidosis so there are further risks on an early SCT) and I feel that I can’t really focus on work until I’ve reached that stage.

I know my situation is different to yours, but my experiences so far, have been that outside agencies are very keen to get me back into work. However, I don’t know what my employer’s stance would be if I wasn’t being paid by the insurance company and I was still effectively within their head count. I would be surprised if ATOS found you incapable of never being able to return to work, particularly if this stance wasn’t backed up by your doctors. Good luck to you Emma and apologies for the rambling response! X

[alicenorthParticipant]

I a very sorry to hear of Eva’s passing. I recall that she was a very informed patient and made sure that she was getting the best treatment that was available to her, even though that meant flying down from Scotland. I remember being very much in awe of her dogged spirit. My thoughts are with her husband. Xx

[alicenorthParticipant]

Hi Lisa

Thank you so much for posting this.  It is very relevant for my situation. I was diagnosed just over 3 years  ago, aged 42. My daughter was 4 at the time and in her first few weeks of  Infant school.  We have never told her anything. I was fortunate to get through CTD with minimal side effects. She was too young to even notice why I’d stopped working. However, not telling her has hung over mine and my husband’s head. It increases my levels of anxiety. My daughter is  almost 8 now and moving into year 4 of junior school in September. I’ve been seeing a psychologist who recommended that we tell her now, whilst I am “well”.  We had planned to do this next week after a hospital check-up (touch wood, everything will be fine). However, I’ve been having  doubts, particularly as a close friend has questioned the wisdom of us telling her and worrying her. Your post is just what I needed to read – thank you!

Best wishes to you and your family.

Alice xx

[alicenorthParticipant]

I’m an occasional  lurker. I have to be honest and say that the reason I don’t contribute anymore is because of some “forthright” replies I received on a topic that the responder clearly didn’t agree with or had opposite views. They would have done better to have kept quiet, in my honest opinion. That and the new forum format has stopped me from actively participating. A shame, but I guess you can’t please everyone.

[alicenorthParticipant]

I was diagnosed 3 years ago and have only had CTD. I am currently treatment free and in complete remission. the exception is monthly zometa. I have no bone issues. My understanding is that I have zometa because of its anti-myeloma qualities. Apparently, for this reason, I will be on it indefinitely, rather than just 2 years, which is the norm, apparently.

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