Dear Kim
I’m sorry that, as yet, no one has replied to your post. I hope you don’t mind if I try to answer your questions. My name is Ellen and I am one of the Myeloma Information Specialist at Myeloma UK.
I’m sure there are quite a few forum users who are under the care of Prof Cavenagh, he is a well-respected world renowned haematologist. Perhaps someone will come along shortly with some personal experience.
In the UK the care of myeloma patients is overseen by a consultant haematologist who, along with the multidisiplinary team, will manage not only treatment for the myeloma but also treatment for any complications it has caused – such as bone pain. Sometimes, if a patient has pain which isn’t being managed effectively, they are referred on to a specialist in palliative care. Palliative care specialists are healthcare professionals who are experts in controlling the symptoms caused by the complications of myeloma, particularly pain, and whose priority is to improve quality of life. As far as possible, the patient will be cared for by the different areas of expertise within the same hospital so there shouldn’t be any need to specifically seek an alternative at a different hospital.
I hope this has been of some help, but if you have any further questions, or would like to talk things through, please feel free to call the Myeloma Infoline on 0800 980 3332 – I or one of my colleagues can clarify things for you further. Alternatively you can email directly to askthenurse@myeloma.org.uk
With best wishes
Ellen
Dear Kay
I am sorry that, as yet, no one has responded to your post. I hope this won’t put you off posting on the Forum in the future.
Sometimes patients who have had quite a few treatments for their myeloma – and especially quite toxic treatments such as the high dose chemotherapy used during stem cell transplant – can experience problems with their bone marrow doing its job effectively; that is manufacturing new healthy blood cells. It may take these patients somewhat longer to recover from treatments and sometimes the bone marrow can be weakened permanently, these patients need to be supported by regular transfusions and growth factors. It is hoped that by supporting the bone marrow in this way that it does begin to recover.
The recovery period following a donor transplant can take time but it is very individual and will depend on the side-effects. Some of these are quite different to the side-effects following a transplant using your own stem cells. The main issue is graft-versus-host disease in which the immune system generated by the donor cells recognizes your own cells as being foreign. However, it is also an indication that a graft-versus-myeloma effect is going on too. There are others on the forum who have had donor transplants and I am sure they would be able to share their experiences with you.
I hope this has been of some help but please do not hesitate to get in touch if you have any questions – I or one of my colleagues will do our best to help. We can be contacted directly by email to askthenurse@myeloma.org.uk or on the freephone Myeloma Infoline on 0800 980 3332
With best wishes
Ellen
Dear Val
I am sorry that, as yet, no one has responded to your post. This may be because no one on the Forum has experience of extramedullary plasmacytoma; I hope this won’t put you off posting on the Forum in the future.
As you know, plasmacytomas are areas of localised build-up of abnormal plasma cells which form lumps or tumours. These can occur either within bone or outside bone where they are called extramedullary plasmacytomas. Most extramedullary plasmacytomas occur in the head and neck region, particularly in the upper airways (nose, throat and sinuses).
For an extramedullary plasmacytoma to be diagnosed often a biopsy of the lump is required , MRI scans are also particularly useful in identifying plasmacytomas and for monitoring their growth. Treatment for plasmacytoma is generally radiotherapy.
I hope this has been of some help but please do not hesitate to get in touch if you have any questions – I or one of my colleagues will do our best to help. We can be contacted directly by email to askthenurse@myeloma.org.uk or on the freephone Myeloma Infoline on 0800 980 3332
With best wishes
Ellen
I am sorry that no one, as yet, has replied to your post; I hope this won’t put you off posting on the Forum in the future.
Unfortunately bone damage, fractures and pain are common problems in myeloma. Patients who are receiving treatment for their myeloma should also be on a drug to protect their bones, to reduce calcium levels and to help with pain. These drugs are called bisphosphonates and whilst they cannot repair damage that has already been done, they go a long way to preventing future damage and fractures. The bisphosphonate most commonly prescribed is called zoledronic acid (formerly known as Zometa) but there are others as well..
It may still be possible for your mum to have surgery for her fracture; however, there may have already been a degree of healing to the area which might make this quite difficult. A referral to an orthopaedic surgeon may be necessary – they would be able to determine if this was still possible after such a length of time.
Myeloma UK produces an Infoguide which tells you a little more about myeloma bone disease, you can download it from this site or, alternatively, I could post one out to you.
I hope this has been of some help, but if you have any further questions, would like to talk things through or would like to receive the Infoguide I mentioned, please feel free to call the Myeloma Infoline on 0800 980 3332 – I or one of my colleagues can clarify things for you further. Alternatively you can email directly to askthenurse@myeloma.org.uk
With best wishes
Ellen
I am sorry that you have not yet received any replies to your post. I suspect that as your situation is quite a complicated one, that no one on the forum has similar experiences to share.
My name is Ellen and I am one of the Myeloma Information Specialists at Myeloma UK; perhaps I can clarify some things for you. Liver function is monitored very closely in myeloma patients as many of the drugs used and in some cases the myeloma itself, can affect the liver, so every time you have blood taken your liver function will be monitored. If it looks as if your liver function is being affected then your haematologist may lower the dose of the drug which may be causing it, or even stop it temporarily (until liver function recovers), or stop the drug permanently if necessary.
High-dose chemotherapy, in particular, can be toxic to the liver and the decision to go ahead with a stem cell transplant would be very carefully considered. Some haematologists may consider using a lower dose of the chemotherapy drug used – usually melphalan. Your haematologist will be able to clarify these things for you.
I hope this has been of some help, but if you have any further questions, or would like to talk things through, please feel free to call the Myeloma Infoline if you are in the UK on 0800 980 3332 – I or one of my colleagues can clarify things for you further. Alternatively you can email directly to askthenurse@myeloma.org.uk
With best wishes
Ellen
I am sorry that you have not yet received any replies to your post. I hope you don’t mind me responding, my name is Ellen and I am one of the Myeloma Information Specialists here at Myeloma UK.
I am sorry to hear that you dad collapsed and was hospitalised. This is quite an unusual and severe reaction and it may be that no one on the forum has had a similar experience. It is difficult to know why your dad may have collapsed – it could have been due to a number of things. Infections and vomiting, for instance, can cause dehydration and this can lower the blood pressure. I’m not sure if a collapse would be related directly to the protein levels worsening, but it could be indirectly related if the kidneys were becoming affected or if calcium levels were rising significantly.
Patients can sometimes experience severe allergic reactions to medications and this can cause collapse, so it may be that your dad was having a reaction to the drugs he was on. I hope that they get to the bottom of things in the hospital and that he is beginning to improve and feel better.
I hope this has been of some help, but if you have any further questions, or would like to talk things through, please feel free to call the Myeloma Infoline on 0800 980 3332 – I or one of my colleagues can clarify things for you further. Alternatively you can email directly to askthenurse@myeloma.org.uk
With best wishes
Ellen
Thank you for your post, my name is Ellen and I am one of the Myeloma Information Specialists here at Myeloma UK.
I am sorry that no one, as yet, has replied, this may be because hyperparathyroidism is rare and no one on the forum has experience of it.
Both myeloma and hyperparathyroidism can cause raised levels of calcium in the blood, but this perhaps is where the similarity end.
The parathyroid glands produce a hormone that helps control the body’s calcium levels. In myeloma patients, calcium levels can be raised because of the effect myeloma can have on the bone.
Briefly, myeloma can thin and weaken the bone and in doing releases calcium from the damaged areas into the blood, hence levels are increased.
Myeloma is diagnosed using a whole range of tests and investigations – not just the calcium levels – and anyone suspected of having myeloma should be referred to a haematologist.
I hope this has helped and perhaps one of the forum users will come along with similar experiences.
However if you do have any questions that I can help with pease do not hesitate to get in touch either by email to askthenurse@myeloma.org.uk or by calling the freephone Myeloma Infoline on 0800 980 3332; I or one of my colleagues would be very happy to talk things through with you.
With best wishes
Ellen
Dear Laura
Thank you for your post, my name is Ellen and I am one of the Myeloma Information Specialists at Myeloma UK.
I’m sorry that , as yet, you have not received any replies, please don’t let this put you off posting on the forum, it may be that no one has experienced the issues that you describe or that you post has been missed by forum users amongst other new posts
The kappa level of 43,800 is very high and it is hoped that the treatment that your husband is on will reduce this rapidly. I hope that one of the discussion forum users will come along to share their experiences but if you have any questions that I can help with please do contact me on the freephone Myeloma Infoline on 0800 980 3332 or by email to askthenurse@myeloma.org.uk
All the best
Ellen
Dear Suzi
I am sorry that no one, as yet, has replied to your post. It may be that no one has the experience of non – secretory myeloma. I hope you don’t mind me replying. My name is Ellen and I am one of the Myeloma Information Specialist here at Myeloma UK.
As you know, the majority of myeloma patients secrete a measurable paraprotein. Patients diagnosed with non-secretory myeloma do not produce a paraprotein; this type of myeloma is rare but is no different to secretory myeloma in terms of treatment options and how it affects the body.
The problem is the difficulty in monitoring given the absence of paraprotein in the blood. Most patients with non-secretory myeloma would therefore be monitored through regular bone marrow biopsies, close monitoring of the healthy bloods – the red cells, white cells and the platelets is also important as they can be affected by myeloma activity. It is also important for the patient to report promptly any signs or symptoms that may mean the myeloma is active those may be new or increasing pain or fatigue and recurrent infections.
A PET scan can be useful in identifying response to treatment or relapse in those patients who have non-secretory myeloma as it identifies areas of fast dividing cells and can quickly pick up changes in myeloma activity or areas of new activity. However there are other cells of the body which divide quickly and this can occasionally throw up ‘false positives’. Again this is why the patient needs to be vigilant.
I hope this has been of some help, but if you have any further questions, or would like to talk things through, please feel free to call the Myeloma Infoline on 0800 980 3332. Alternatively you can email directly to askthenurse@myeloma.org.uk and I or one of my colleagues can clarify things for you further.
With best wishes
Ellen
I’m sorry you encountered a glitch in the survey. I emailed Dr Patterson this morning and this was her prompt reply:-
Dear Ellen,
How very frustrating – I am really sorry but I have not heard of any glitch from others completing the survey on either Mac or PC. I know glitches in general can happen for a number of reasons but we have not had this happen with anyone else.
I am forwarding this to Raed to check as he is more technically able than I am. We will check with the survey host.
Please convey our frustration to the member of your community as we certainly would not wish anyone to have such an experience and are very grateful for the time contributors invest and do not want anyone to waste their time.
Thank you, Jennifer
Dear Cathy, I’m sorry that as yet no one has responded 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.
An increase in the paraprotein reading can be alarming and the concern is that it may indicate that the myeloma is becoming active again. That said, many haematologists wouldn’t necessarily rush into retreating anyone whose paraprotein had risen and most will not make any decisions based on the paraprotein level alone. What doctors look at is the trend over a period of time. Doctors will take other factors into account and a rise in the paraprotein may prompt them to order other investigations such as additional blood tests a bone marrow biopsy or new X-rays. They would also take into account how well the patient is feeling in general and if there were any new or increased symptoms, such as pain or fatigue.
Any relapse would be managed on an individual basis taking into account previous treatments, the response and how well any treatment was tolerated. Generally in the UK patients at first relapse are offered treatment with the drug Velcade but there may be other options and this of course would depend on the individual situation.
So to summarise:
I hope this has been of some help, but if you have any further questions, or would like to talk things through, please feel free to call the Myeloma Infoline on 0800 980 3332 – I or one of my colleagues can clarify things for you further. Alternately you can email directly to askthenurse@myeloma.org.uk
With best wishes
Ellen
Dear Simon
I hope you don’t mind me replying to your post. My name is Ellen and I answer the Myeloma Infoline at Myeloma UK. It sounds as if you are in a very difficult place emotionally and psychologically. The feelings that you have are perfectly natural, you are absolutely not alone in having them, I’m sure many patients on this forum would agree that they have gone through periods of extreme anxiety, self doubt and despair. This is actually quite a common reaction, particularly after a stem cell transplant. You have been through a very intense procedure which involved a stay in hospital surrounded by doctors and nurses who checked you several times daily and now you are expected to get on with things, to pick up where you left off before admission and to regain your former strength both emotionally and physically, and this is a huge ask.
This is something that is actually well recognised by doctors and nurses so can I urge you to seek help. I can assure you it won’t be the first time your specialist nurse or your consultant has heard this and there will be someone who can help. Many patients tell me that a referral to a counsellor or clinical psychologist has helped them come to terms with their situation and has allowed them to take back some control. So please do speak to someone at the hospital or your GP if you have a good relationship.
Bottling things up, as you know, is not healthy and the longer you do it the harder it is to open up to someone and to ask for help. Often keeping things to your self is a kind of defence mechanism and its done to protect loved ones from hurt and to avoid exposing vulnerability. If you do open up to loved ones you may be surprised at their response, they may be relieved that there is something they can do to help, but I know that making that first step is not easy.
I wonder if you might benefit from talking about your feelings to someone not directly involved. If you call the Myeloma Infoline on 0800 980 3332 you can speak to either myself, Jude or Maggie. We provide information, emotional support, practical advice and a listening ear to many patients and families on a daily basis. Calls have no time limit, are confidential and can be anonymous. If you feel that talking to another patients on the phone may be helpful we can match you up with one of our PEER members. Our PEER members are patients and families who have said they are happy talking to others on the phone to share experiences and to provide practical advice and support to those in a similar situation.
I hope that this has been of some help Simon and please remember you are not alone in this.
Good afternoon Tony, thank you for your contributions to this forum.
Can I clarify that the article in Myeloma Matters – Autumn 2014 states that Green Tea should only be avoided when on treatment with Velcade as it may interfere with the way it works.
All the best
Ellen
ellen.
Dear Louise
I am sorry no one has yet responded to your post; it may be that none of the other forum users have the same or similar experience to that of your uncle. I hope you don’t mind me replying. My name is Ellen and I am one of the Myeloma Information Specialists at Myeloma UK.
There are a number of factors to consider when deciding whether a patient is suitable for a stem cell transplant. Generally speaking, patients have to be in relatively good health, over and above their myeloma. For example, any heart or lung issues would be taken very seriously. This is primarily because the possible benefits are often outweighed by the potential risks to less fit (and older) patients. It may be that if your uncle’s heart problems improve then his doctor might consider him for a transplant in the future. This would actually be a very reasonable question for your uncle to ask his haematologist.
I have not heard of the treatment with the acronym EPOCH, I wonder if you perhaps mean ESHAP, a combination of chemotherapy drugs which are given intravenously (into the vein). ESHAP is an acronym for the drugs etoposide, methylprednisolone, cytarabine & cisplatin. It is not commonly used as it can be tough to tolerate so it is generally only given for one or two cycles.
I hope this has been of some help but if you have any further questions, or would like to talk things through, please feel free to call the Myeloma Infoline on 0800 980 3332, alternately you can email directly to askthenurse@myeloma.org.uk and I or one of my colleagues can clarify things for you further.
With best wishes
Ellen
Dear Ian
I am sorry that no one has yet replied to your query; it may be that no one has had a similar experience. I hope you don’t mind if I try to clarify things for you.
It is common for myeloma patients to have raised calcium levels (hypercalcaemia) and this often occurs as a result of myeloma bone disease which causes calcium to leak into the blood stream. Hypercalcaemia can affect the kidneys and can cause other complications so it is important that the levels be kept under control. This can be done with intravenous fluids and bisphosphonates drugs such as zoledronic acid (formerly known as Zometa), Pamidronate or the oral tablet Sodium clodronate. If the intravenous bisphosphonates are used your kidney function will be closely monitored as they can also put the kidneys under added stress.
We do provide booklets on both Myeloma and the Kidney and Bone Disease and Bisphosphonates which can be downloaded from this site, or if you would like me to post them out to you then please do let me know.
I hope this has been of some help, but please do not hesitate to get back in touch if you have any further questions or if you would like to talk things over. My colleagues and I can be contacted directly by email to askthenurse@myeloma.org.uk or on the freephone Myeloma Infoline 0800 980 3332, which is open Monday to Friday 9am to 5pm.
With best wishes
Ellen
webteam.
