Hi Susie and all
I notice that the BBC News website is reporting that the breast cancer drug Kadcyla is back on the list after Roche reportedly cut its price.
As you say, it all seems to come down to money. What seem odd is that if NHS England takes a specific drug off its list then the drug company presumably gets no revenue from this source once a drug is de-listed, in which case you might think that some ( reduced ) revenue is better than none? Better a bird in the hand than two in the bush.
Maybe my home economics are too simplistic?
Hope this helps.
David S
Hi Andy
So glad to hear that you have have pulled through and have a recovery strategy sorted out. It really sounds like you have been through the mill with this one. Hope you are back to full strength soon.
More importantly you have your priorities sorted out ie the beer!!! I discovered Purple Moose brewery in North Wales recently during a trip to Aberdaron. I can thoroughly recommend.
I have a theory that Adnams Broadside kills all known germs – I hope it has the same effect on Myeloma, so I keep drinking it!
All the best
David S
Hi Scott
I experienced a lot of fluid retention around my body during initial treatment with CTD which took some time to wear off, this caused the pressure in my eyeballs to increase which was picked up during an eye test, but I didn’t experience any vision problems. My consultant said that it was due to the Myeloma treatment and after a few months the pressure returned to normal.
Reagarding dizziness, after my stem cell and other treatment, sometimes if I have been sitting for a long time eg train or bus and get up too quickly I do feel a little light headed for a short time but it soon passes. Never had this problem before diagnosis.
The experts on the Helpline may be able to give you more advice.
Hope this helps.
David S
Hello Gordon
I can only support whole heartedly your comments about the value of Patient and Carer info days.
I have been to three now at Manchester, Cardiff and Edinburgh and have been surprised at how much I have learnt at each one.
I was diagnosed in 2013 and it was more than 6 months before I spoke to anyone who had Myeloma and this was at one of the patient days. For obvious reasons, it is very difficult to speak to other patients in the hospital clinic, so isolation during treatment is one of the hurdles to overcome.
Hope this helps.
David S
Hello Everyone
We have now firmed up on the arrangements and the first meeting of the West Lancs and Sefton Myeloma support group will be held on Tuesday 5th January 2016 at 2.00 at the MacMillan Living Well Centre in Southport.( see http://www.southportmacmillancentre.org.uk)
Details are on the support section of the Myeloma UK website.
With the help of my daughter I have also set up a Facebook page for the group for the benefit of those who prefer to use social media. ( I am afraid that I am still a bit of a luddite so far social media is concerned.)
Hope this helps.
David S
Hello Susie
The flu jab is just one of a long list of inoculations for those who have had stem cell transplants in order to build back the body’s immunity to all the childhood and other bugs which the treatment affects. I have got used to having a bruised arm. Now I know why babies cry when they have their jabs!!
Just had mine last week for the second year, no really adverse reaction just a bit achy for a couple of days. Worth it if it works, that said, last year’s jab was said to be not very effective against the strain of virus.
Hope this helps.
David S
Hi Roseanne
Hope all goes well with your mum’s stem cell transplant.
I had my transplant 18 months ago aged 59. All went well but I was quite tired afterwards for a few months.
They do say that everyone’s experience is different and for me boredom was never an issue. The medical and support staff are in fairly often and there were times when I felt tired and just wanted to doze.
The hospital may have a leaflet explaining what to take in and what not to bring. I found a small portable radio and earphones useful and of course a mobile phone and charger to keep in touch with family. Family photos and drawings from my young grandchildren also helped to keep my spirits up.
The ward team should be able to answer any specific questions about your mum’s stay. They are the experts and are there to help. Don’t be afraid to ask.
Advice is also available from the Myeloma UK helpline and there may also be a local support group.
Hope this is helpful and that all goes well.
David S
Hi
The advice is always to speak to the medical experts or the Myeloma helpline if you have any concerns.
Your not alone. Lack of mobility seems to be a common side effect of Myeloma either due to bone damage, problems with the spine and spinal cord, and muscle weakening as a side effect of the medication.
I had all three when first diagnosed but am now mostly sorted and enjoying an improved quality of life.
Hope this helps.
David S
Hi Julian. Sorry that you have had to join the Myeloma club.
Everyone seems to react differently but your symptoms sound very familiar to me. It is really tough whilst you are having the treatment, but for me most of the side effects like swollen ankles and puffy face do wear off in time once you finished. Even doing the basics can be quite challenging.
Looking back it seems funny now, but I was advised to put my feet up to help the swelling in my legs. So I sat in the garden reading a paper and even within half an hour got dreadful sun burn. Self inflicted but I was in agony for a month afterwards. I think the drugs make the skin more photosenstive.
There is plenty of advice available from Myeloma UK eg helpline and booklets if you are worried and of course you should hestitate to go back to your consultant or specialist nurse of you have queries, they are the experts.
Good luck on your Myeloma journey.
David S
Hello Graeme
I was diagnosed at 59 years old and am now 18 months post stem cell and feeling better than ever.
Everyone’s experience seems to be different, but for me it was quite a while before the fatigue started to wear off. I was OK pottering around the house, light house work etc but no stamina. From reading other posts and articles it seems to be that the younger and fitter you are to start with the quicker you recover.
Myeloma UK has a buddy system whereby you can speak to another patient who has been through it – I found that chatting with someone else invaluable before making up my mind. There is also the Myeloma UK helpline and the infoguide on SCT was a really good source of information. I would recommend making contact with one of the local support groups if there is one in your area or attending one of the patient information days where you can talk to others who have been through similar treatment or chat with themedical experts in an informal atmosphere.
Good luck and hope all goes well.
David
Hi Bijou
Sorry to hear that you are having a rough time of it and have joined the Myeloma UK club. Hearing about a diagnosis of Myeloma is a shock to everyone. Late diagnosis seems to be one of the common problems with Myeloma, in my case I was in agony for two months and could barely move, but had been prescribed Ibrupofen and Paracetomal for my back pain by my GP. This was before a physiotherapist suggested a blood test which started my Myeloma journey.
There are lots of helpful leaflets and other information on the Myeloma UK website. Also it might be useful to see if there is a local Myeloma support group in your area, it is always good to speak to other patients, it helps to reduce the sense of isolation.
You will find out that Myeloma is very individual depending on all sorts of factors. My advice is to ask your consultant or specialist nurse lots of quesions if you are worried or unsure.
Hope this helps.
David
Hi, sorry to hear that your dad is having problems with the medication. I would certainly agree with Tony that if you are worried then go and ask the experts, that is what they are there for.
I was on 6 cycles of dexi as part of CTD, 4 lots of 20 ( each 2 mg) three times each cycle – I remember eating them with Cheerios for breakfast. The two main side effects for me were fluid retention everywhere, just like Michelin man, and the muscle weakness your dad had, which combined with spinal damage meant i was fairly immobile for several months, I could just about manage 10 or 20 yards.
The muscle wasting seems to be a viscious circle, the less you do the worse it gets. As soon as you are up walking again, thing start to get better. There are some exercises you can do in a bed or a chair but again I think you need to take expert advice in case you do more harm than good.
I started to see an improvement a week or two after I stopped the CTD but if I am honest it was a couple months before I was able to walk any real distance of a mile or two.
Hope this helps and that you start to see some improvement.
David
Hi Mervyn
Hope you are feeling better soon and coping. I don’t recall anyone say that it is easy, but everyone’s experience seems to be different.
I think patience and common sense are important as well as following the advice of the doctors and nurses. I kept a diary when I was in and have several entires of ` pretty tired’ between days 3 and 10. My neutrophils started to come back strongly on day 10 and was home on Day 16. Expect to feel tired for quite a while afterwards.
It can be mentally exhausting as well as physically demanding, so try and think of some nice things to do when you are well again.
All the best
David
Hello Mervyn
Good luck with your stem cell transplant.
I am now 15 months on from mine which I had in Liverpool and am doing well. I took in a radio with headphones,books and crosswords which kept me busy. You will find that the nursing and support staff are in every couple of hours day and night to keep an eye on things so you won’t get bored. I found that it was very frustrating being hooked up constantly to the drip line trolley especially when showering and going to the loo in a hurry, the wheels always seemed to be pointing the wrong way! I was up and dressed every day but on a couple of days half way through you are likely to feel pretty tired.
The advice to suck ice lollies when having the melphalan worked well for me. Try and do everything you are told by the nursing staff since they know best, particularly where eating and drinking are concerned, often easier said than done. Contrary to what the papers often say I found the food and care to be first class under the circumstances. I was lucky in having a relatively straightforward time and was back home after 16 days – expect to feel tired for a few months afterwards. I was up and about soon afterwards at home but found that the mind was quite often more willing than the body.
Hope this helps. Good luck
David
Hello Emma
It is difficult enough having to deal with myeloma without having to worry about work as well. My experience ( again from a civil service background and as both a manager and employee) has been quite different.Part time working, working from home, flexible hours – nothing has been too much trouble for my employer who has been extremely supportive throughout. Employers need to be flexible when dealing with cases of ill health to distinguish between the genuine and those who play the system. I would suggest that you contact someone senior in HR ( SCS or one grade lower) to explain your situation and discuss your options.This may avoid dealing with rule book based middle managers. They will know what can be done within the system, eg career break, job share etc. It sounds as though the OHA report supports your case. If your are a member of a trade union they can also provide lots of advice and a local rep can attend meetings with you. It may be obvious but it is always a good idea to a record of meetings, emails, discussions and calls in case you need them in the future. Managers have alot of discretion, it is up to them how they choose to exercise it. If you are off work, it also helps to keep in touch with your line manager every few weeks, but they should be doing this anyway.
Hope this helps.
David
Good luck with the treatment.
David
