This topic contains 15 replies, has 8 voices, and was last updated by 
andyg 9 years, 8 months ago.
Hi all
We had a very miserable consultation yesterday. It seems pretty definite that Colin has light chain myeloma because he has a pp that is undetectable. After the first cycle of bendamustine we don’t know whether it’s worked or not. The results are likely to be in next week…..but the consultant we saw was so negative and I was really cross about it.
Conversation went along the lines of how are you, platelet slowish at 75, that could mean bleeding (no advice or explanation unless pushed), ok you can have next treatment. We asked about if there was anything in the blood to give a clue to if it was working, no, then he said if this doesn’t work we are in big trouble (actual words). I said how come as I though there were other treatments. He said no and the. I said what about various things I’d read and also the initial treatment Colin had was very effective. He then said yes there were other options. He went on to say kidneys can fail abruptly and he wasn’t going to lie to us. Wouldn’t expect that but expected some encouragement as well! The last light chain reading was 6000. Colin and I lef the meeting feeling like this was the last chance.
He had had revlimid and dex (got into complete remission), 2 injections of Velcade with cyclophos and steroids (failed). Now on bendamustine, surely there must be other things after this? Colin is very worried and I am concerned he will give up! I keep quoting Andy G as the shining example of battling on but it’s not cutting the ice at the moment. Sorry to go on but I’m looking for some information and some scourge meant.
Vicki
Dear Vicki,
sorry your consultation was so negative. Where is Colin being treated? You could ask to be refrred elsewhere for second opinion. It is evident that not only is MM a very individual disease in terms of its behaviour, but there are no real ‘rules’ as to how to treat it, so it is guessswork, save the guidance from NICE, whch the NHS staff will follow, unless you are eligible and can get onto a trial to try some
In the UK the options for ongoing treatment are not that extensive and each specialist has their own take on how and whether to offer an expensive treatment to someone. Although in the USA medical insurance is key to getting approval of treatments, they do seem to be more clear about the differences in approach taken by the leading institutions at the forefront of treating MM. There are more experiments with new treatments, e.g. monoclonl antibiodies, if you can get on a trial.
In the UK and many other places availability of drugs/ treatments as well as NICE’s assessments will always limit options for MM sufferers. Equity in cancer treatments does not exist.
Go on fighting and asking questions until you are clear about what can realistically be done.
Life is a gift. Do not let the negatives spoil the good bits.
Hi Vicki
Please ask for another consultant, yours does not seem to know much about current treatments! There is no way that after trying just Velcade and Bendamustine you have run out of options. Maybe the way these drugs work is not right in Colin’s case, so maybe better avoid proteosome inhibitors (Velcade, Kyprolis) and alkylating agents (Bendamustine, Mephalan). First at all, if Revlimid worked previously, it can work again and can then be used as maintainance too if you are worried about relapse. Also, if Revlimid worked, other immunomodulatory drugs most probably work too. These are Thalidomide and Pomalidomide (Andy knows all about these). If there are problems about using these drugs because of side effects, the drug dose can always be reduced to suit the patient. And how about the good old chemotherapy drug cyclophophamide? Hope you will find another consultant who is a bit more positive about Colin’s disease and treatment options.
So sorry to read this Vicki I know what you mean about clinic too many new faces I have got to like Dr shield nowperhaps you should ask to see Dr chown? I hope they sort this out fast today must have been frightening for you both its hard enough to stay positive without this kind of remarks. Stay positive you have my number call me if you feel the need x x Geoff is now on cycle 3 of velcade no results yet.
Hi Vicki
We have an awful consultant too. Very abrupt and all doom and gloom. We have to say to the receptionist when we go to the clinic that we don’t want to see him, although this didn’t work on our last 2 visits. Ian would not have been put forward for SCT if we hadn’t seen a different consultant. I have been in tears when I have seen him as he is not helpful at all and also tells us this is very bad.
When explaining SCT he said that Ian could end up either dead or bedridden . Consultant at Glasgow explained the risks but also said it was a common procedure.
Go to another consultant, it is your rite .
Hopefully you will get the right treatment for Colin soon.
Keep calm.
Maureen x
Hi jacqui
I will private message you…..colin isn’t happy I posted this as he thinks they will be cross and his treatment might be affected. I mentioned no names but it was a very difficult day yesterday. I reckon jeff must be doing ok if they are pressing on to the third cycle. Must be working! That’s good. The weird thing is that Colin has no pp detectable. It’s only light chains. Is jeff very tired. Colin is tired for most of the time. We don’t know whether it’s myeloma getting a grip (he is so tired and it’s notmgood to see), or whether it’s the treatment,
Apparently they only send the light chain checks off in batches so we don’t know exactly when they are coming back. I’m worried as Colin’s platelets are 75. Don’t know how low they can go before it becomes a problem. This just seems to be a total nightmare.
Hoping things are working out better for you and jeff!
Vicki x
Hi Maureen. Was very interested with your comments of your disappointment with your consultant. I too have had I feel a bad response from mine. I went to mine and he actually put in his head in his hands and said that the with the results he had in front of him , he just didn’t know what to do next. He would have to have a discussion with his peers and get back to me. This was a very worrying moment and didn’t inspire me with any confidence. It took 3 months with another blood test and bone marrow test to be done in between. The three months seemed like forever. In the meantime I spoke with a myeloma nurse on the phone who told me to get a second opinion. She gave me some doctors and numbers as referrals and I then got these referrals from my own GP with a letter. The Royal Marsden was my option for a second opinion. He was shocked at my results and the decisions that been made in my care. He then explained what should have happened and what should happen from then. He wrote to my consultant. When I had my last consultation with my consultant , he was a very different man . He picked up on the fact that I had had a second opinion and acted upon this letter and suggestions. I am not under the kings in London now , all due to this second opinion and heading towards a SCT. Just started a course of strong velcade with thalidomide etc. the will have a harvest , then a strong chemo to kill of as much bad cells as possible. I will at this point, I have been told, to expect to be very ill. I see that your husband is about to under take the same procedure. I hope that he will get through it and sail towards a good remission . I wish him all the luck in the world and that you keep me posted how it all goes, as I am not going too far behind him. Does he have other symptoms . I have kidney failure, but I feel very normal which is a little odd to say , I am hoping that such an aggressive procedure isn’t going to bring on other problems and be a downward slide to complications that so far I have escaped. Take care , I am thinking of you , the lord is holding your hand just keep believing . Amanda Hart.
p.s. made a mistake it should read that I am now under the Kings in London and note it should not read I not with the Kings.
What a difference it makes. We saw the specialist nurse today, Colin has started cycle two. She was amazing, positive, practical, informative, discussing options with out minimising what is at stake. We felt like two different people coming out of the appointment today. It gave us both renewed positivity and willingness to look to the future. Obviously we hope to see the light chain numbers reduce, godwilling, but the nurse was so easy to talk to, she gave us confidence. So different to the other day.
Back on positive mode
Vicki and Colin x
Hi Amanda, don’t come on here much now but just reading and note you are going into SCT with kidney failure – I had mine Xmas 2013 with a gfr of 28 and it didn’t impact on them (negatively) at all. Had it done at Leeds and they did say they have had a patient on dialysis who came off dialysis after SCT when the myeloma burden had been reduced. Good luck with it all – it’s particularly scary with little kidney function with the risk of infections etc but plenty have done it.
Rebecca
Hi Rebecca
Thank you for your reply. I noticed that you too have kidney failure, my gfr is 6% so I am just hanging on. I was very pleased to learn that your SCT didn’t impact on you negatively. How are you feeling now and did you find the SCT an aggressive procedure ?. I don’t suppose I will be lucky enough to save my kidneys as they are very low in function and the SCT may finish them off. I am not really so worried about the kidney side , but more on how things are going to be during and after the SCT. I have heard of so many people not feeling well for years after , and some the SCT hasn’t even put them in remission for much longer than 6 months. Its all very daunting when your in the unknown and everyone is so different. Myeloma is a very complicated illness and effects everyone in so many different ways its mind boggling . I notice that you had your SCT in 2013 how have you been in that year ?. Have you felt well and has the SCT made any progress in slowing your myeloma or are you in remission. I would love to hear how it has been for you whilst you had treatment and after. Please try to get back to me I would like to hear your story. Every little account helps to build a picture as to what the future may bring. God Bless You and guide you through to the light. regards Amanda.
Hi vicki glad it went better with the specialist nurse and that colin is starting treatment again x x think of you both often. Geoff goes to clinic next thursday not sure if we will get any results yet this is end of cycle 2 stay positve x
Hi Jacqui
Hope you get some good news with geoffs treatment. The specialist nurse was aboslutely brilliant. She was informative and encouraging. We felt like two different people when we came out of there. She is definitely worth a chat. She has time and doesn’t mind what questions you ask. Would definitely recommend it. We should meet up some time. Colin is in treatment at the hospital on a Thursday and Friday once a month. But he has got to have bloods done there every Monday. I go for consultant appointment which is on a Tuesday, then we have hospital in a Thursday and Friday.
Our next clinic is end of March……
I reckon if geoff is having cycle 3 it must be working for him 🙂
How are you feeling jacqui?
Vicki and Colin x
Vicki
It is so much better when the consultant has more empathy and explains things well. Hope the treatment is working for Colin and yes this is Ian’s best chance.
Amanda
Ian had spinal compression and his mobility was affected but now walking with one stick, driving the car and at the gym twice a week. We are both a bit scared of infections etc for SCT but trust in god to pull him through it. I wish you well for your forthcoming SCT and will pray for you.
Maureen x
Hi vicki were you at EJU today around lunchtime as thought i saw you. Geoff is startkng cycle3 tomorrow he is in at 1o clock. Geoff pp has gone down to 9.3 after first cycle. Hope colin is doimg well x
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