Thank you for this Jorge. It is indeed an error and will be changed today.
All the best
Ellen
Hi Debs
This is indeed very interesting and we will be posting a briefing on the news section and on here next week.
Vaccines in general have been looked at for a while in myeloma and other cancers. This particular vaccine is stimulating the immune system to target a protein called MUC-1 which is over-expressed in ~90% of all cancer cells including myeloma. Although the study is still in the very early stages, myeloma patients who were given the vaccine produced an immune response which in some cases led to a reduction in their myeloma. However, more patients need to be tested.
This trial is not available in the UK ? only in Israel at the moment.
If anyone has any questions then please do phone the Infoline
Best wishes
Ellen
Dear Pete
Thank you for your post, but as Dai points out this forum is mostly used by myeloma patients and their families. It may be best if you were to contact Leukaemia Research on 020 7405 0101 Monday to Friday 9am – 5pm
Or via their website at :-
http://leukaemialymphomaresearch.org.uk/
I hope this helps
Ellen
(Myeloma Information Nurse Specialist)
Thank you for posting on the discussion forum. My name is Ellen Watters and I am one of the Myeloma Information Specialists at Myeloma UK
I am sorry to hear your dad has been told his myeloma is in his brain. I hope you don't mind me responding but this is an extremely rare complication and I don't think any of the discussion forum users will be able to answer your question or will know of anyone in a similar situation.
Unfortunately, myeloma which is affecting the brain is difficult to treat. Doctors may consider giving chemotherapy via lumber puncture into the spinal fluid (sometimes called an intrathecal injection) which helps the chemotherapy get into the brain better than the normal oral or intravenous routes. This method of giving chemotherapy may be something worth discussing with your dad?s doctors to see if this is an option for him.
If you would like to call the Myeloma Infoline on 0800 980 3332 I or my colleague Maggie will do our best to answer any questions you have to help clarify things. Alternatively, if you prefer you can email askthenurse@myeloma.org.uk
Kind regards
Ellen
Hi Dai, Bridget Min and Eve.
Thank you, as always, for your contributions to the discussion forum.
Dai this is a very tricky subject. One thing I?d like to stress, however, is that a high fluid intake is very important to keep the kidneys in the healthiest possible condition. The way the urinary measurement is carried is not influenced in any way by how concentrated the urine is – so please continue to drink the daily recommended amount.
Ellen
Having smouldering myeloma can be a cause of much uncertainty and anxiety, and I absolutely take on board your frustration that at present treatment is not recommended. The reason for this is that there is not enough evidence to suggest that the benefits of treatment at this stage outweigh the risk of side-effects. However, this is still an area of active research and the latest reports suggest that treatment may help in delaying the progression to active myeloma in ?high-risk? smouldering myeloma patients. See http://www.medpagetoday.com/MeetingCoverage/ASHHematology/30258
On a general note, there are a number of less intensive treatment options for older patients with active (symptomatic) myeloma that are available. Decisions about treatment are very individual and depend on factors such as the patient?s general health, their age, personal wishes, the nature of their myeloma and level of any complications caused by it. Although treatments for older patients are less intensive (usually combinations given at lower doses) they remain effective against the myeloma and are better tolerated as they have fewer associated side-effects.
The latest news section on our home page has a questions and answer section which may be of interest.
Thank you for your questions Eve.
It may be best to contact either myself or Maggie directly. Email to askthenurse@myeloma.org.uk or on the freephone Myeloma Infoline on 0800 980 3332. We will do our best to answer your questions in order to clarify things for you.
Kind regards
Ellen
Dear Eve, I hope I can clarify things for you but as you know I cannot comment on individual cases.
In myeloma patients the percentage of plasma (myeloma) cells within the bone marrow can range from between 10% to 100% and is measured by a bone marrow biopsy. The percentage of plasma cells in a healthy individual is less than 5% and for MGUS patients between 5-10%.
Myeloma is often called multiple myeloma because it can affect more than one bone in the body. The spread of myeloma within the bone marrow of an affected bone is not uniform and can often occur in clumps or pockets. This can sometimes make biopsy results inaccurate as the sample may not be taken from an area containing the myeloma cells so other measurements are taken in conjunction.
Usually, myeloma is monitored by measuring the abnormal protein or paraprotein that is produced by the myeloma cells. However, for some patients who have what is known as ?non-secretory myeloma? this can not be measured. True non-secretors don?t even produce the light chain part of the paraprotein structure so the serum free light chain test is also not useful. For these patients, doctors will be guided more by the results of the other tests and scans that are used to measure the extent of the myeloma and response to treatment:
? Blood tests to measure the levels of red cells, white cells, platelets and various proteins
? MRI or PET scans which provide much more detail than X-rays
? Regular bone marrow biopsies.
PET scans are not as widely available as MRI scans but can be a very useful way of visualising the myeloma in the body. Normally a substance is injected into the patient which concentrates in the myeloma cells. Therefore areas of myeloma cells can be detected and located as ?hot spots? by scanning the whole body. If a patient has responded well to treatment, then these ?hot spots? should reduce or disappear.
Generally, the patient will know whether their treatment has worked as the symptoms they had before treatment will have resolved and they will feel better in themselves. However, this of course can sometimes be masked by the side-effects of treatment.
Ellen
We have been following this thread very closely. Here are a few points the group may find useful.
There are a number of organisations in the UK that hold registries of donors for bone marrow and stem cell transplants. Both the ?Anthony Nolan? organisation (http://www.anthonynolan.org/) and the British Bone Marrow Registry (BBMR, http://www.nhsbt.nhs.uk/bonemarrow/) have details of stem cell, bone marrow and cord blood donors from England, Scotland, North Wales and Northern Ireland. The BBMR is responsible for recruiting, testing and registering blood donors who volunteer to become donors. It is also part of an international network, performing searches around the world to identify suitable donors for patients in need of a donor transplant.
Anyone wishing to donate will need to have growth factor injections to boost their production of stem cells and to encourage the stem cells to move from the bone marrow into the blood, in much the same way as patients having an autologous (patient?s own) stem cell transplant undergo. Similarly, the stem cells are harvested and collected by a procedure called apheresis which involves the blood being filtered to separate the stem cells. These stem cells are then stored frozen until they are required.
Donor (allogeneic) stem cell transplants can be of benefit to some myeloma patients. It is generally only considered for younger and/or fitter patients after the risks and benefits have been assessed for the individual. The most important factor is having a matched donor, usually from a sibling, to reduce the chances of rejection. If a sibling donor is not available, then an unrelated but matched donor can be used – this is where the ?Anthony Nolan? organisation and BBMR come in.
In response to Dai?s comments – in recent years, the outcome of allogeneic stem cell transplants has improved greatly especially with the introduction of mini-allogeneic transplants. Although allogeneic stem cell transplant is not considered a part of routine treatment for myeloma, under the British Society of Bone Marrow and Transplantation guidelines, it remains a clinical option for those eligible for this type of transplant. Therefore, all accredited transplant centres should in theory be able to offer this procedure provided a donor is available.
Several international studies are ongoing to investigate the benefits of allogeneic stem cell transplants either alone or in tandem with autologous stem cell transplants. The latest results do suggest that there may be a survival advantage for those patients for whom it is an option. If anyone is interested in reading the reports of these studies or would like to know more about allogeneic stem cell transplants in general, do let us know by calling the Myeloma Infoline on 0800 980 3332 or by email to askthenurse@myeloma.org.uk
Kind regards
Ellen
Hello Paul
I am sorry to hear that you have been diagnosed with light chain myeloma. I hope that the following clarifies things for you.
Normally, plasma cells in the bone marrow produce an enormous variety of antibodies, or immunoglobulins as they are sometimes called, to help fight infection. These are made up of two heavy chains, identified by the letters G, A, D, E or M and two light chains called Kappa (k) and Lambda (?). Each individual immunoglobulin (Ig for short), can only have one of the five possible types of heavy chain, and one of the two possible light chain types.
In myeloma, abnormal plasma cells release only one type of antibody (immunoglobulin) known as paraprotein which has no useful function. In most people with myeloma these abnormal antibodies are made of both light and heavy chains. However in about 20% of patients, the myeloma cells produce light chains only (no heavy chains at all). This is called ?light chain? or ?Bence Jones? myeloma.
We have an Infoguide on the test which measures free light chains in the blood. I can post it out to you or you can find it on the website at http://www.myeloma.org.uk/information/myeloma-uk-publications-list/
I moderate the discussion forum but try not to intervene too much. If you have any questions you would like me to answer then please contact me or my colleague, Maggie, by phone on the freephone Myeloma Infoline on 0800 980 3332 or by email to askthenurse@myeloma.org.uk
Ellen
It is with great sadness that I have to forward a message from a long-time friend of Gaye?s. Sadly Gaye died on Saturday at 8.45 pm at Fairhavens Hospice. Her friend asked me to let her friends on the discussion board know.
Dear Dai
You might be interested to know that Myeloma UK is in the process of setting up something very similar to what you have described, via the discussion forum – an online diary if you like.
The idea is to enable the patient to generate a ?treatment profile? and log down their experiences during their treatment course. They would then print this off and take to their doctor to help ask the right questions at the consultation and provide the doctor with an accurate account of what the patient has experienced since this last visit.
While this project is still in development, it could be modified so that it requires doctor input allowing patients to get the information they want from their doctor and this could be added to the patient?s profile.
So watch this space as they say
Ellen
Hello.. I am sorry that you haven't had any responses to your question. A syngeneic transplant is very rare in myeloma so it's likely that forum users don't have any experience of it.
This reply will bump your post back up though so hopefully it will be seen by someone who can answer your question.
Kind regards
Ellen
Thank you Heath. This is something that I have come across a few times since joining Myeloma UK and have spoken to one or two patients and carers either on the Myeloma Infoline or by email.
I have checked with my colleagues here at Myeloma UK and wanted to let you know that an Infosheet on Plasma Cell Leukaemia will be available in the near future. I have also added it to the list above.
Ellen
