Dear Domg6
Please drop me a line to askthenurse@myeloma.org.uk or call the Freephone Myeloma Infoline on 0800 980 3332 and I, or my colleagues, will do our best to answer your questions.
With best wishes
Ellen
Good morning everyone.
I have just spoken to Sue and she has asked me to pass on her and Keith?s appreciation for all your kind wishes at this difficult time.
Ellen
I am sorry that, as yet, you haven?t had any responses to your query. I hope you don?t mind me replying. My name is Ellen and I am one of the Myeloma Information Specialists at Myeloma UK.
Nose bleeds can occur for several reasons in the general population. For some people, frequent nose bleeds can occur as a result of low platelet levels. Platelets are small blood cells that help our blood clot normally, if we cut ourselves for instance. If you notice an increase in the occurrence of nose bleeds, or you notice bleeding from anywhere else, then this is something that should be mentioned to your doctor.
I hope that this helps but please do not hesitate to contact me directly on the Myeloma Infoline on 0800 980 3332 or by email to askthenurse@myeloma.org.uk
Ellen
Dear Kim
I am sorry that, as yet, you have had no responses to your query. I hope you don?t mind me replying. My name is Ellen Watters and I am one of the Myeloma Information Specialists at Myeloma UK.
The issue of MGUS and pregnancy is one that has come up before on the Myeloma Infoline, so I have previously asked a number of haematologists for their advice on this issue.
The general consensus was that none of the haematologists that I spoke to were aware of any evidence or reports of MGUS progressing due to pregnancy. One haematologist confirmed that she knew many MGUS patients who went on to have safe pregnancies and healthy babies.
I hope that this helps but please do not hesitate to call me on the Myeloma Infoline on 0800 980 3332 or email askthenurse@myeloma.org.uk
Ellen
Dear Vanessa,
Thank you for posting on the Discussion Forum, I am sorry that you haven?t had many replies. My name is Ellen and I am one of the Myeloma Information Specialists at Myeloma UK. I hope that the following clarifies things for you.
An allogeneic transplant involves the use of stem cells from a donor instead of using the patient?s own stem cells (autologous transplant). Although it can be very effective in inducing a long remission, standard allogeneic transplants unfortunately are associated with substantial side-effects and an increased risk of mortality. In the past few years, doctors have developed what they call a mini-allogeneic transplant which involves the use of lower doses of chemotherapy that is much safer and associated with less severe side-effects yet is effective in treating the myeloma. A standard allogeneic transplant is now very rarely offered.
By way of background and for other forum users who may have some questions, generally speaking, allogeneic stem cell transplants (both standard and mini) are thought to be more effective in controlling the myeloma than autologous stem cell transplants because once established, the donor cells recognise any residual myeloma cells as being foreign and can destroy and remove them. Any residual myeloma cells after an autologous transplant remain and therefore a relapse would occur at some point when the residual myeloma starts to progress again.
Unfortunately, the donor stem cells may also recognise the healthy cells as being foreign and start attacking them ? and this is why allogeneic transplants are much riskier. The vast majority of myeloma patients have an autologous transplant because many are not eligible for an allogeneic transplant either because they do not have a donor match or because of their age (generally restricted to patients under 50-55 years).
There is some research evidence to suggest that having two consecutive transplants (tandem transplant) may be better than one so some patients may be offered a second transplant within six months of their first autologous transplant. The second can be either another autologous transplant or if eligible, a patient may be asked to consider a mini-allogeneic transplant. The reason again for the latter is because of the potential of producing a much longer remission than a second autologous transplant. The research evidence gathered so far is very mixed and not at all clear with some studies reporting a benefit of tandem autologous-mini allogeneic transplants while others do not.
At present, because of the lack of evidence to prove its benefits, a tandem transplant of either kind (autologous-autologous or autologous-mini allogeneic) is not part of routine practice and ultimately the decision would be down to the haematologist offering it.
I hope this has been of some help, but please do not hesitate to get back in touch if you have further questions or would like to talk things through. I and my colleague Maggie can be contacted directly by email to askthenurse@myeloma.org.uk or on the freephone Myeloma Infoline on 0800 980 3332
Ellen
I'm not a patient but I speak to many patients and their families every day, either on the Myeloma Infoline or via email.
It must be so hard for you being so far from your son, please don't worry about picking up the phone and calling me or Maggie or emailing us. That is absolutely why we are here.
However, we are off after 3pm today until the 2nd of January so if you aren?t able to call today, you can read about stem cell harvest and transplant and many other aspects of myeloma and its treatment here on our website, just click on ?Patient Services? at the top of this page.
Best wishes
Ellen
I wonder if by ?Blood Reap? you mean stem cell harvest? This is a procedure where a patient?s stem cells are collected prior to a stem cell transplant. A stem cell transplant is standard treatment for myeloma patients who are able to tolerate it and is carried out very routinely in the UK.
To read more about the procedure, including harvest, please have a look at our Infoguide ?High-Dose Therapy and Autologous Stem Cell Transplantation? which you can find on our website here:
http://www.myeloma.org.uk/patient-services/myeloma-uk-publications/infoguides/
Alternately, I can send you a hard copy if you email me at askthenurse@myeloma.org.uk or call the Myeloma Infoline on 0800 980 3332 with your mailing address.
Best wishes
Ellen
Thank you,
Stu will remove these ASAP.
All the best
Ellen
I am sorry that you haven?t had any replies from anyone who has experienced a second stem cell transplant. My name is Ellen and I am one of the Myeloma Information Specialists here at Myeloma UK.
I wonder if you have heard of our PEER programme. It is made up by ?PEER Members? ? patients, family members and carers ? who are willing to share and communicate with others who contact Myeloma UK and are seeking information, support and/or reassurance from someone who has been or is in a similar situation.
PEER Members offer support by talking about their experience, giving practical advice and giving reassurance by answering their questions and listening to their concerns. I know that a few of our PEER members have had two stem cells transplants and if you feel that this is something that would help then please do contact me by email to askthenurse@myeloma.org.uk or on the freephone Myeloma Infoline on 0800 980 3332.
Best wishes
Ellen
Mr Bradley, thank you for bringing this to our attention, we have now made the necessary changes. Please accept our apologies for any confusion caused.
I would also like to clarify that our free quarterly newsletter, Myeloma Matters, which you receive in an envelope by post is available on subscription. To subscribe, please contact Nicola 0131 557 3332. Archive issues (latest edition not available) can be viewed on the website at http://www.myeloma.org.uk/patient-services/myeloma-uk-publications/myeloma-matters/ if you do not wish to receive hard copies.
Our e-newsletter is sent to you by email every month and provides a brief round-up of the latest news on myeloma and Myeloma UK. To request this, you need to subscribe via the website.
If you have any questions or would like to subscribe to Myeloma Matters or to the e-newsletter then please don?t hesitate to get in touch with Nicola on 0131 557 3332 or nicola@myeloma.org.uk
All the best
Ellen
Welcome to the discussion forum. I hope you don?t mind me replying to your post. My name is Ellen and I am one of the Myeloma Information Specialist at Myeloma UK. I hope I can help clarify a few things for you.
Pain is a big problem for many myeloma patients. There is much that can be done to treat and manage pain but sometimes it can take a little while to find the most effective pain relief for each individual patient. In most cases, the pain will begin to subside once the treatment brings the myeloma is under control. In addition, the bisphosphonate your relative is on not only helps to protect their bones but can often help relieve pain caused by the bone damage from the myeloma.
Sometimes, radiotherapy for localised areas of bone can help to relieve bone pain especially if the painkillers are not working. It is not uncommon for myeloma patients to be referred to a pain specialist or a palliative care expert and is something she should ask her haematologist if her pain continues. We have an Infoguide specifically on pain which I can send out to you if you call the Myeloma Infoline on 0800 980 3332 or email me on askthenurse@myeloma.org.uk or you can download it from this site http://www.myeloma.org.uk/patient-services/myeloma-uk-publications/infoguides/
A distended stomach is not usual for myeloma patients and it should be seen to by the doctor as soon as possible so that the underlying cause can be treated. This may or may not be the reason for her loss of appetite. Instead of eating three meals a day, she might perhaps prefer to have 6-8 snacks/small meals throughout the day. There are also liquid food supplements she could take and it may be an idea for her to be referred to a dietician.
I?m sorry that your relative lives alone and this is causing you some worry. It is important that her healthcare team are aware of this as it may be possible for her to get some home help. It is important also that your relative has the details of who she can contact if she is worried about anything.
All the best
Ellen
Dear Charlotte
I'm sorry to see that you haven't had any replies to your post. I hope you don't mind me replying, my name is Ellen and I am one of the Myeloma Information Specialists at Myeloma UK.
I think that the reason you have had no replies is that solitary plasmacytoma is fairly rare and it may be that none of the folk who contribute to the Forum have any direct experience with it. However, if you have a read through some of the other posts, for instance in the 'Side-effects' section (you can do a search if you log in) you will see that many people have experience of steroid side-effects.
If you have a look on the ?Patient Services? section of the website you will see that there is an Infosheet specifically on Solitary Plasmacytoma http://www.myeloma.org.uk/patient-services/myeloma-uk-publications/infosheets/ which does state that radiotherapy is usually a very effective treatment, but that long-term follow up is recommended as there is a risk of progression to myeloma in some patients.
It is very encouraging that you have done so well and that check-ups show no sign of myeloma. If you feel it would help to speak to myself or my colleague, Maggie, then please do not hesitate to call the Myeloma Infoline on 0800 980 3332 or email us at askthenurse@myeloma.org.uk
All the best
Ellen
Dear Stephen
Thank you for this, it is very useful, very comprehensive and explains the stem cell harvest process very well.
Ellen
In the past, thalidomide has caused devastating birth defects. For this reason its
use is carefully regulated under a risk management programme designed to prevent
exposing unborn babies to thalidomide.
This programme is called the Pregnancy Prevention Programme and was a
mandatory requirement before thalidomide could be considered for approval by the
regulatory authorities. It is under the responsibility of Celgene Ltd, the company that
markets thalidomide, to ensure that all prescriptions of thalidomide are controlled.
You can contact Celgene directly via their website at: – http://www.celgene.co.uk/
If you have any questions please feel free to contact me by email to askthenurse@myeloma.org.uk or on the freephone Myeloma Infoline on 0800 980 3332
Best wishes
Ellen
Hello Mari
I am glad to hear that Stephen is doing well on Velcade with minimal side-effects and that his paraprotein is less than 2.
Velcade is currently only licensed by the Medicine and Healthcare Products Regulatory Agency (MHRA) to be administered intravenously and is approved by NICE on this basis.
In the USA, the Food and Drug Administration (FDA) have recently approved the use of subcutaneous Velcade in myeloma and in Mid 2011, Janssen, the pharmaceutical company responsible for Velcade, applied for a license in Europe through the European Medicines Agency (EMA) to administer Velcade subcutaneously. The decision on this is due to be published in the Summer 2012. If this method of administration receives approval at the European level, it can then become available for myeloma patients in the UK. However, there may need to be an additional step involving NICE approval but at present, it?s not clear whether NICE will become involved.
As the data on subcutaneous Velcade are strong, and because of the positive decision in the USA, we are confident that this method of administration is likely to receive approval by the EMA. Myeloma UK has been following this process with interest and we will be updating our supporters on the outcome of the EMA decision.
If you have any questions on the MHRA assessment of sub cut Velcade, please contact my colleague Kate on +44 0131 557 3332 or email kate@myeloma.org.uk
