My suggestion is to speak to your consultant and the nurses on the Myeloma UK helpline to explain the figures. There are probably other factors to take into account such as overall fitness and other blood counts when trying to interpret the pp levels.

Hope this helps and that your husband is keeping well.

David

Perhaps we should ask Myeloma UK to do some badges for us to wear at 5, 10 15, 20 years post diagnosis – bronze, silver, gold, platinum !

David

Thanks for this helpful feedback. Why just the London marathon? I am sure that this would also apply to other events and would provide useful publicity for fundraisers during the year.

Hope this helps.

David

I have to say that I share some of hartsdown views at the top of this post.

I wanted to toss in a tenner to help runners on the London Marathon and spent ages searching for a runner who was raising funds for Myeloma UK. It doesn’t help that there are lots of different online charity donation platforms. I did eventually find the team of 27…[Read more]

My journey began in 2013 when I was 59. I was in a pretty bad state with spinal compression and could hardly move for 6 months due to back problems. 18 months of treatment followed with radiotherapy, CTD and stem cell transplant. My quality of life is much improved and pps have only just started to rise slowly again, so that’s six…[Read more]

That’s great news and inspiration to us all. Thanks for posting this. Looking forward to seeing something similar in 10 years time !

Good Luck

David

Good luck with your recovery, expect to feel tired for a months.

Fantastic to see that your youngest is running the marathon today, is there a weblink for donations?
David

I had my stem cell transplant over 4 years ago, and yes , all my hair fell out but it did grow back quite quickly and for me was not a problem. I think it is probably different for women rather than men about how they feel.

I suggest that your sister has a chat with your local Macmillan centre. They deal with all types of cancer and regularly…[Read more]

Just a comment along the lines that the Policy and Public Affairs work which Myeloma UK do to influence the organisations such as NICE and NHS is really important.

It’s great that new drugs are coming along but no good if patients can’t access them – remember the original campaign by Eric Lowe ago to get patient access to…[Read more]

I am also a patient. Diagnosed 5 years ago and had my SCT 4 years ago.

Sounds like you need to speak to a haematology specialist, have you thought of asking for a second opinion? This should not cause offence. You may also like to enquire about the extent of any genetic profiling that has been done. This may help to add to the available…[Read more]

Just seen your post about itchy skin problems.

I think my skin is certainly more sensitive and/or itchy since having myeloma treatment. It always seemed to be linked to Zometa infusion but might have been the SCT or other chemo. It seems to come and go every few weeks and is more of a nuisance than anything so it is hard to complain – I…[Read more]

I was great seeing your blog, very interesting and thoughtful. Another way to reach out to all of those affected by myeloma.

Good to see that you enjoyed the Birmingham Infoday -MUK held their North West Infoday in Liverpool this year and it was a great success.

Wishing you well.

David S

Sorry to hear that you are having problems at the moment. Sounds like you are having a bit of a rough time of it.

Hope they can sort you out soon and quickly get you back on the road to recovery.

All the best

David S

Sorry to hear that you have been diagnosed with myeloma and are having bone problems which seems to be quite a common complication with myeloma.

I would certainly recommend speaking to one of the nurses on the Helpline. They are very knowledgeable and friendly and it is their job to help patients and carers affected by myeloma.  I would…[Read more]

We didn’t have the opportunity to review and discuss this Forum which Myeloma UK have set up for the benefit of support group…[Read more]

Glad to hear that things are starting to improve.

There may be other people you can ask for help beyond the medical team at the hospital. Your local Macmillan Centre may be able to offer assistance and there are plenty of Myeloma patient support groups around the country , so hopefully one will be nearby, or there are the Patient Infoday…[Read more]

Sorry to hear that your husband has myeloma and is finding the treatment difficult to cope with. It must be very hard on you both.

They say that myeloma is very individual and everyone is different. I didn’t have too many problems myself with the various types of treatment ( CTD) but there is no harm in asking for a second opinion – I don’t…[Read more]

Presume that you have investigated the costs of going privately. I may be wrong, but I seem to recall seeing somewhere that the cost of Revlimid was £64 per tablet.

Hope this helps.

David

Sorry to hear that you have had a rough time of it recently.

I had radiotherapy on my back 4 years ago, no real problems with it I have to say except for the short term suntan and the ever present fatigue. It seemed to do the job of dealing with the plasmacytoma in my spine and the accompanying back pain.

Hope you have a speedy…[Read more]

Sorry to hear about your father’s diagnosis of myeloma. Hope you are coping.

There’s lots of information availbable from Myeloma UK.  I would also suggest speaking to one of the nurses on the helpline if you have any questions, or attend one of the Infodays or make contact with a local myeloma support group.

I agree with everything…[Read more]

Your best speaking to the nurses on the Myeloma UK helpline, they are the experts in this sort of thing or your local healthcare team.

They say that myeloma is very individual and I am sure that you can find all sorts of posts on various website with lots of people have different pps at various times. I am not an expert, the numbers can…[Read more]

I had the same side effects usually known as ` zometa flu’ the first time I had the infusion but it quickly went away and not had any real problems with zometa since then for the next two years, having now completed treatment.

They say that the best advice is to drink plenty before and after the infusion, other than that I always…[Read more]

I seem to have stirred up a bit of a hornet’s nest today with my posting on the Facebook page. This simply quoted something I read today in the Times newspaper about GP’s missing myeloma diagnoses.

Tony F has made a good suggestion that may be more could be done during Myeloma Awareness Week in June. So my question is whether support…[Read more]

Sorry to hear that you haven’t had any luck yet with treatment options, it does seem to be hit and miss, what works and what doesn’t.  This seems to be the nature of myeloma.

I don’t have any direct experience myself of the drugs you mention, but wish you luck with your treatment.

Have you tried the nurses on the Helpline, they are…[Read more]

Sorry to here that you are suffering, it sounds like a real roller coaster up one day and down the next.

It is often difficult to know if these periods of aches and pains are due to the myeloma, the side effects of treatment, old age, normal ailments that everyone catches or in my case self inflicted from too  much DIY.

I hope they can…[Read more]

Good to hear that you have finished treatment.  I think that all the travelling and hanging around for appointments is pretty tiring without having to cope with myeloma.  Hope that you now have a good long period without further treatment.

I certainly felt tired for quite a while due to the chemo and radiotherapy but life gradually d…[Read more]

I am a physicist also ( wonder if there is any connection ) and have been through a similar process of thinking about levels of accuracy, calibration and limits of detection for the measurement of paraprotein levels.  It does make me wonder when results are sometimes quoted to two decimal places and patients get worried if it has…[Read more]

Like you, we are self funded and have low or no running costs for our monthly meetings of the West Lancs and Sefton myeloma support group. Any money we have raised has gone directly to Myeloma UK.

If I am honest, the need for accountancy, transparency and auditing to relect good practice in dealing with charity money is a…[Read more]

Hope the radiotherapy goes OK for you.  I had it on my spine. Apart from all the travelling and hanging around in hospital which you have to accept as part of the job, it went well.  Ended up with a nice square shape sun tan for a few weeks on my back, but this soon faded. I seem to recall that calomine lotion held to ease the i…[Read more]

Sorry to hear that you may have myeloma.

There is plenty of useful information on this website, and from the nurses on the helpline.  They say that myeloma is a very individual disease so it can often be difficult to find out how it might affect each of us as individuals.

There are a number of patient info days around the country which…[Read more]

Yes it can feel like a rollcoaster at times, up one day and down the next.  Hopefully for you there will be more of the good days.
Fatigue seems to be a common side effect of the treatment.  There is plenty of advice out there on how best to manage.  Here is a link to one of Myeloma UK’s infoguides or maybe speak to one of the nurses on…[Read more]

Sorry to hear that you are not well just now.  I had Melphalan as part of SCT but I suspect that the doses given outside of SCT are very different.

There is some useful information on this website under the heading of ` drug finder’.  To save you looking here is the l…[Read more]

Good to hear that you have finished the CTD and have had a great response.  It can be a slog towards the end of cycle 6, but as they say no gain without pain!

For me, quality of life started to improve a lot once I had finished the CTD and the side effects of the treatment start to wear off.

Good luck and keep well.
David

Initial feedback from patients and healthcare professionals indicates that the new support group tri-fold leaflets are being well received and are working well.

Sorry to hear that you are having a rough time at the moment.  This cold winter weather we having is probably not helping, but the snowdrops are coming out so spring and some warm sunshine are not too far away.

Hope that things start to improve once this round of treatment is finished.

I was at a talk last week given by one of our…[Read more]

Your clinical team are probably the best people to advice but in the meantime why not have a word with one of the nurses on the Myeloma UK Helpline.  They are really friendly and very knowledgeable.  There may also be something in booklet form which may be of interest.
Hope this helps.

David

There is plenty of advice available from Myeloma UK and I found that the Infoguides were a real help. I would also recommend attending one of the patient infodays or going to a support group meeting if these are going on in your area.

The nurses on the Infoline…[Read more]

Zometa appears to quite common as part of initial myeloma treatment. I had it for two years after which my consultant said that there was no evidence that staying on it for long had any beneficial effects.

That said, this practice does seem to vary around the country from hospital to hospital from what I have seen and heard.  Maybe it is…[Read more]

Stem Cell Treatment like you in 2014 and fortunate that my quality of life is much improved.

I don’t know if I can offer much help or advice except to say that the vast range of medication we have during treatment ( I was on 40 tablets a day at one stage ) is bound to have some side effects.

I have found that skin irritation and muscle…[Read more]

Good to hear that you have responded well to the treatment and the myeloma is under control, just the colateral damage to sort out now.

It may help you to know that you are not alone in having mobility problems, it seems very common with myeloma unfortunately.  I was pretty much in a wheelchair for six months myself and unable to move…[Read more]

Sorry to hear that you are having a rough time of it at the moment.

It may help to have a chat with one of the nurses on the myeloma infoline.  They are very helpful and know a lot about myeloma, so will be able to give you some advice or send you some information.

Hope this helps.
David

Sorry to hear about your diagnosis, hope that you are coming to terms with what has happened.

There is lots of useful information available from Myeloma UK either as booklets or downloads.  I found them very helpful.  I would also encourage you to use the Helpline, the staff are fantastic and it is their job to help patients like us – n…[Read more]

There seems to be plenty of positive news coming out on the drugs front which gives hope for the future.

There is a MUK Infoguide series on Velcade and myeloma – this might be a good starting point for you and probably answers some of the questions in your post.
Seasons Greetings and…[Read more]

I would suggest having a look to see if there are any local myeloma support groups near to where you live.

There are now over 90 around the country so hope you fill find one suitable.  These provide an excellent opportunity to meet and talk to others in a similar position.  In the absence of a myeloma specific group there are plenty of h…[Read more]

David S

Feedback from support group members following the meeting has been very positive.

West Lancs and Sefton myeloma support group pleased to attend and support this initiative.

There is a good information guide in the publications section here on this website which you might find helpful.  Here is the link https://www.myeloma.org.uk/wp-content/uploads/2013/09/Myeloma-UK-Serum-Free-Light-Chain-Infoguide.pdf

If you need a hard copy then I am sure the Helpline will be able to arrange this.

David