[AV8RParticipant]

It’s a shame to read that some patients have suffered undue pain during Bone Marrow Biopsy. I was diagnosed in October 2011 and have since received three BMBs. The first at Weston General Hospital and the other two at the Avon Haematology Centre in Bristol. On each occasion I was given local anaesthetic with great care. I was told what was going on and only had pain when the actual aspiration took place. This I would liken to tooth ache. But it only lasts for a few seconds.

It would seem that the techniques used by the healthcare professionals have a significant impact on the patient experience. At the moment BMB would seem to be vital for the accurate assessment of myeloma. The procedure should not be distressing. If patients feel it necessary, they should ask for additional anaethetic.

Keep well everyone

Stephen

[AV8RParticipant]

Charlie

Very good to hear from you. I trust that like me the Revlimid is not giving you any great problems. I get slight constipation and runny tummy but both are minor and easily managed.

I trust your SCT was not too arduous. My Paraprotein was slow to go down to the plateau of 5 so maybe you will see further change. Even so, if you’re feeling well, then excellent news.

Since I my SCT my wife and I have had holidays in Madeira, Cyprus and Italy and without any troubles. The trip to Italy was very special as we commemorated my uncle who had been killed in 1943; exactly 70 years before. You can read the account on http://www.hf694.org.uk

In my view life is like Mecano; it’s up to us to decide what to make of it!

Keep well

Stephen

[AV8RParticipant]

Hello

I’m sorry to hear about your husband who, reading your other posts, has had a rough time. I believe you are in the right place on Myeloma UK who publish some excellent guidance and provide this forum where you can express yourself and perhaps get some reassurance.

Looking at your questions I think you remain uncertain about the benefit of high dose therapy (HDT). This can be a subject about which some people have strong opinions. For some who are too old or too frail, the treatment is considered to have more disadvantages than advantages. There has also been a debate whether it is beneficial given the development of new drugs. The decision to proceed with HDT must be between yourselves and your consultant. I am a strong advocate of informed decisions so do read everything you can on the subject. From my experiences, and in my personal opinion, HDT offered me the best chance of lengthy remission and associated quality of life.

Similar to Vicki’s husband, Colin, I was diagnosed in October 2011. I received 4 cycles of RCD and two consolidation cycles of VCD. For me, neither treatment brought my Paraprotein to zero so HDT would seem to have been the best choice (whatever others might think). It was made clear that in order to proceed to HDT I needed to achieve a reduction of at least 50% in PP. I believe that this was to demonstrate that I would respond favourably to HDT. Once the decision was made that I should receive HDT the next appointment was to check my general health to ensure that there was nothing that would preclude the treatment.

The first element was two nights (should have been just one) in hospital to receive Cyclopriming. This is not given at all hospitals. It involves a fairly high dose of cyclophosphamide and lots of fluids. The intention is to encourage the excessive production of stem cells.

The next element was a course of growth factor injections. I chose to be taught how to self-administer them. They have to be given to a very strict timetable. Like some others on this forum, I did develop quite severe bone pains.

Toward the end of the course of growth factor, I then attended the apheresis unit just like Colin. At the unit, they first take a blood test called CD34. The result does not take long and confirms whether cells are available. I was then connected to the apheresis machine on three consecutive days until I had harvested just enough cells to proceed. The number of cells varies a lot between patients and, in my case, may have been influenced by Revlimid. It has a reputation for suppressing the production of stem cells.

It was then necessary to attend another clinic to again check my overall health to ensure that I would be fit enough to be admitted. Three days later I was admitted into the ward for High Dose Therapy and Stem Cell Transplant.

That was July 2012. I had been warned that the process, from diagnosis to recovery from HDT&SCT would take about a year. I was rather more fortunate being discharged after 16 nights and my recovery was quicker than is perhaps usual. I was able to go on holiday to Madeira in February 2013. My response to treatment seemed disappointing but my PP continued to fall until July 2013 when it reached a plateau of 5 (thus Very Good Partial Response). What is most important though, I feel wonderful. My energy has returned although my back ache does limit some activity. My quality of life is excellent. Was it worth it? Yes! Would I do it again? Yes, and in fact I will try very hard to get a second HDT&SCT even though I currently don’t have any spare cells.

One final point. I note your concerns about Zometa. Like many others, I was put on it when first diagnosed and, so far, have not got any side effects. The benefits, for me, have far outweighed any disadvantages.

I sincerely hope that your husband, and you, have the best possible experiences. Good luck to you both.

Stephen

[AV8RParticipant]

Hi Graham

It’s disappointing to hear of your experiences. The comment from TonyF will no doubt give you some hope.

I wonder whether your experience has been with just one specific consultant and if so, maybe a change would be appropriate.

Like many others on this forum I’ve been able to get blood results when I’ve asked. Whilst I was receiving SCT I requested and received my blood results in printed form. I was thus able to track my progress and response to treatment. Everyone I see at clinic appreciates my preoccupation with Paraprotein results and are eager that I’m informed of the latest test. I also receive copies of the letters sent to my GP which contain other blood results.

The “Guidelines for the Diagnosis and Management of Multiple Myeloma” (published by the BCSH) state at paragraph 13 that “The provision of information and support for patients and their carers is essential if a patient is to come to terms with their diagnosis and make informed decisions about treatment options.” It would be difficult for your hospital authority to disagree with national guidelines.

Please don’t think that I’m lecturing you but a positive relationship between you and the health care professionals is most important. In your case, this seems absent. I wonder whether anyone attends appointments with you (such as a relative or your nurse specialist). Maybe the consultant would be more cooperative if you had a supporter!

Best wishes

Stephen

[AV8RParticipant]

Grey

It’s refreshing to hear your views on travel insurance. In another thread I had published the fact that my wife and I currently accept insurance without myeloma being covered. Despite indicating that “This suits us but might not be appropriate for others”, it resulted in a stern comment from one contributor that such a strategy was wrong.

When I first spoke to AllClear, who we had been with for some years, they asked whether I had been diagnosed with a “terminal illness”. I said I had been diagnosed with multiple myeloma and that it was incurable. I asked what their definition of “terminal” was. They declined a definition but quoted £770 for one week in Cyprus. To be fair, I was contacting them when I’d just been diagnosed, before treatment, and with some spinal damage. I can understand that, at that time, I was an unknown and thus potentially high risk.

Recently I decided to try to get a definition of “terminal illness”. The most authoritative document I’ve found so far is the “Statement of Best Practice for Critical Illness 2011”. It is a .pdf document published by the Association of British Insurers (the ABI). Do note that the document relates specifically to Critical Illness insurance so may not necessarily be the ABI’s view for travel insurance. At paragraph 3.2.5 the definition of Terminal illness is:

A definite diagnosis by the attending Consultant of an illness that satisfies both of the following: The illness either has no known cure or has progressed to the point where it cannot be cured; and In the opinion of the attending Consultant, the illness is expected to lead to death
within [the earlier of] 12 months [and the remaining term of the cover].

We have taken the view that we want to travel and at an affordable cost. That means taking some responsibility ourselves. But I repeat my caveat – such a stragey might not suit others.

Keep well everyone

Stephen

[AV8RParticipant]

Hi Jeff

Last year I attended the Infoday at Cardiff. I was most surprised to hear about the varying standards that patients seem to encounter.

As I’ve mentioned elsewhere on the forum, I rate Bristol very highly. Yes things do occasionally go awry such as my notes not arriving in time for my Zometa treatment but the staff are apologetic and soon get things sorted.

Seemingly unlike some patients, I do have a 24 hour emergency number I can phone for guidance. I can also self-refer to the haematology unit should the need arise. I heard of one hospital which provides SCT but does not provide an en suite toilet and shower. Surely part of the treatment is the need to keep as hygienic as possible whilst maintaining some degree of dignity.

I’ve clearly been more fortunate than some. All the doctors, at every level, have been friendly, professional, willing to listen and to answer my questions. The nurses have been truly caring. They always check how I am and whether I need anything. They try very hard.

I do, however, occasionally meet patients who are angry. Could it be that their mood results from fear? I think we’ve all been there.

I recently came across the British Committee for Standards in Haematology. As their name suggests, they develop guidelines for the treatment of haematology diseases. Their website is at http://www.bcshguidelines.com. If you’re in the mood to read the 99 page guidelines for myeloma (written with a target audience of profesionals) you will find it at:

http://www.bcshguidelines.com/documents/MYELOMA_GUIDELINE_updated_29_aug_RG_jzw_(3).pdf

Keep well everyone

Stephen

• This reply was modified 10 years, 9 months ago by  AV8R.

[AV8RParticipant]

Many thanks for your comments everyone.

Having taken some time out from the forum, I’m reminded that I’m not alone with this disease. Holidays are certainly possible although insurance can be an issue. Companies that claim to be “cancer friendly” don’t seem to be when you contact them. When I was first diagnosed, the consultant agreed that I could have a week in Cyprus before starting treatment. I was quoted £770 for the two of us for one week! Needless to say we declined that. We’re currently insured through Global with an online application process. My reading of the policy is that my myeloma would not be covered but other risks would be. This suits us but might not be appropriate for others.

When we travel, my Clexane goes in the hold so avoiding problems with security. It it were to go missing, I could go on aspirin for a while. My Revlimid, however, travels in the cabin. I had some problems with bruising from Clexane but now seem to have it sorted. I inject at least 10 minutes before getting out of bed. Having put the needle in, I relax the pressure on the flesh a little before slowly pressing the plunger. I also received advice, which seems correct, to avoid any tough skin and thus to not use alcohol wipes.

Best wishes to everyone and keep well

Stephen

[AV8RParticipant]

Hi David

Firstly excellent news on your other post – keep well.

I’m surprised about your DVT. Revlimid is known to carry a risk of thrombosis and so aspirin or Clexane is commonly prescribed. I’ve been on Revlimid both during initial treatment and now on maintenance and, since I have a “sensitive” stomach, I opted for Clexane. I was originally on 40mg but now 20mg (both values corrected 3/2/14) and expect to continue whilst on Revlimid.

Best wishes

Stephen

• This reply was modified 10 years, 9 months ago by  AV8R.

[AV8RParticipant]

As suggested, I’ve been able to reset my password without problems. As discussed elsewhere, my profile was empty. Having replaced it I needed to edit it. On trying to edit, the text seemed to disappear completely!

Also note that the link provided for renewal of Myeloma Matters in the routine letter no longer works. Presume you don’t want it published here.

Good luck

Stephen

[AV8RParticipant]

Hi Vicki

Great to read that Colin is now on the ward. No doubt today he will have his stem cells infused. The time will soon pass and he will be home again so keep cheerful. We've just come back from 2 weeks in Cyprus which just goes to prove that there is life after HDT&SCT !

Please give my best wishes to Colin and keep well yourself.

Stephen

[AV8RParticipant]

Truly wonderful news. I've been reading your thread and worrying about your joint ordeal. You've had an incredibly difficult time but your determination is an inspiration to us all. If I understand you correctly, like me, you found the staff at Southmead to be amazing.

Colin will indeed be exhausted from his efforts and I add my hope that he can build up his strength for the next stage. It takes a while for the effects of the chemo to come through so he should be able to use this time to advantage.

Remember to look after your own health. Very best wishes to Colin

Stephen

[AV8RParticipant]

Hello Amanda

Like your husband, I'm also on the Myeloma XI trial. I've just completed High Dose Therapy and Stem Cell Transplant and was discharged on 18th July. I must now wait until day 100 to see how well I've responded to treatment and whether I'm to be randomised for maintenance therapy.

As Eve has said, each patient's response to treatment will be somewhat different. Her guidance to take one day at a time is also very important. There will be low days but one thing I've learnt is that, subject to any side effects, you can carry on "living" whilst receiving treatment.

There is a wealth of information much of which is out of date, inaccurate and often depressing. I've found The Myeloma UK information to be far and away the most trustworthy. Their Infoguide on Myeloma XI should answer most of your questions. Feel free to contact me direct if you think I can help.

Your husband's journey has just started. Very best wishes to you both

Stephen

[AV8RParticipant]

Hi Tina

Like you I'm on the Myeloma XI trial and was discharged from hospital on 18th July following High Dose Therapy and Stem Cell Transplant.

It would seem that you are being admitted for Cyclopriming. This is a fairly large dose of Cyclophosphamide which will give your stem cells a kick start. It is common for this to be administered during a short spell in hospital so they can monitor you. It will probably then be followed by GCSF for several days before they try to harvest stem cells.

I'm treated at Bristol and they took great care with the Cyclopriming such that I had no adverse effects whatsoever. Let's hope you are also fortunate.

Very best wishes for your treatment.

Stephen

[AV8RParticipant]

Hello Dai

Neutrophyls 0 for 11th to 15th. 0.03 on 16th, 0.38 on 17th, and 2.22 on 18th.

I guess you win your bet. I win being home!

Best wishes and keep well

Stephen

[AV8RParticipant]

This will be my last entry on this discussion as, yesterday, I was discharged from hospital and allowed to come home. 16 nights is hardly a record but certainly below the norm.

During my isolation I was provided prints of my blood tests on a daily basis. It was fascinating to watch them deteriorate due to the melphalan but even more amazing to see them miraculously start to recover and exactly on schedule. As an example, my nuetrophils where 0 on Sunday yet yesterday (Wednesday) they had recovered to 2.22.

The care I've received at Bristol was without fault – a wonderful team who were entirely responsible for my easy ride.

Thank you everyone for your kind words of support – they meant so much to me.

Keep well everyone

Stephen

[Author]

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