My friend was diagnosed Stage 111 Multiple Myeloma in April 2011. She had 24 sessions of chemo treatment with Velcade. In September 2011, the lesion on her left skull started swelling again and new one showed up on left neck. She then took 8 sessions of Revlimid 25mg from Dec 2011 to July 2012 and was due to have an autologous bone marrow stem cell transplant done in October. All her blood tests within the last couple of months shoed that the myeloma did not "flare-up" and was pretty much under control.
However, she started getting headaches in early August. She did both a CT Scan and MRI of the brain 2 weeks ago and it showed multiple \"spots\" on the brain - intra-axial. A brain biopsy was done and the reprt indicated multiple myeloma. According to all medical practitioners we spoke with including her oncologist/heamatologist and the neurosurgeon, this occurrence is extremely rare. 10 sessions of WBRT is being recommended at the 30 level possibly with 6mg of dexamethasone. She is due to start WBRT possibly on Monday October 1, 2012.
The questions are:
Why did the Revlimid not treat with the lesions on the brain?
Will this treatment eliminate the lesions on the brain?
What is the prognosis for my friend going forward?
Any suggestions / comments/ tips, etc. will be greatly appreciated
Reply # - September 29, 2012, 08:32 AM
Reply To: Brain Lesions – Multiple Myelom
Hi helper, I'm so sorry your friend is in this position. How incredibly difficult I know it is.
At this time Grace doesn't cover the specifics of myeloma treatment, I'm sorry.
However systemic chemo treatments don't cross the blood brain barrier with enough significance to stop cancer in the brain. Whole brain radiation is the standard of treatment for brain mets and can be very helpful in treating them.
It's very difficult to say how it will affect your friend but wbr has come a long way since most of the online prognosis numbers. The treatment can get rid of them and have no more impact on her survival. I hope this is the case.
As far as the rarity of this, I'm not a medical professional but I must say in my 3 years on Grace unusual sometimes seems to be the norm in cancer. It can do just about anything and certainly lives up to its reputation.
I hope this helps and the very best wishes to your friend and you,
Janine
Reply # - September 29, 2012, 09:04 AM
Reply To: Brain Lesions – Multiple Myelom
Janine is right to say that we don't have specialist support for multiple myeloma and can't provide expert insight here. It's absolutely true that this is very rare. I do think that whole brain radation would likely be the leading consideration, but it's such an uncommon situation that we don't have data to provide a speculation about prognosis. As for why it happened, I doubt anyone can say. Cancer can do whatever it wants to, and as Janine noted, many patients have some very unusual aspect of their case that requires us to use our best judgment rather than be dictated by good evidence from other people to inform our recommendations.
Good luck.
-Dr. West
Reply # - September 29, 2012, 10:40 AM
Reply To: Brain Lesions – Multiple Myelom
Just wanted to offer a word of support for you and your friend.
I had WBR for brain mets arising from lung cancer. The actual treatment is fine. (They have to make a mask beforehand to protect your face which some people find frightening). The main thing I wanted to flag up for your friend is that she is likely to get very tired - but with a time lag, so that she may feel most fatigued a month to six weeks after the treatment is over. And she might lose her hair, which she may have already experienced with chemotherapy.
I hope the WBR works and she can have the transplant. I'm glad she has you to look out for her.
Reply # - September 29, 2012, 07:40 PM
Reply To: Brain Lesions – Multiple Myelom
Thank you Janine, Dr. West and Certain Spring for your very prompt and encouraging response. I have taken some comfort in the fact that you have all confirmed that WBR is the standard of care for brain mets. I will keep you posted on her progress once the treatment has been completed and a subsequent MRI done.
Reply # - October 22, 2012, 10:12 AM
Reply To: Brain Lesions – Multiple Myelom
Follow-up to my original query. My friend has just completed her 10 sessions of WBR. So far, she has not lost her hair, however, she ha a "pulling" sensation at the top and towards the back of her head. Is this a result of the WBR? Will she still lose her hair? She feels pretty weak and shaky now. Will this feeling go away and after how long? Is there any natural foods she can take to overcome this? The good news is that her oncologist says that her stem cell collection can still be done. Will an autologous stem cell transplant overcome any abnormal cells in the brain? I know you do not provide support for MM but any info will be appreciated.
Thank you
Reply # - October 22, 2012, 10:55 AM
Reply To: Brain Lesions – Multiple Myelom
The stem cell treatment - I've never even heard of that: definitely a question for an expert.
I think it is fairly standard to lose one's hair, although there may be exceptions. Mine started coming out about a week after I finished the treatment. I remember my scalp itching but don't recognise your friend's "pulling" sensation. The mercy is that it comes out pretty fast - if it's going to come out, it'll be over in a few days. The worst thing is cleaning up after oneself; getting the hair out of the bath, off your clothes and so on. I have a bad memory of going for a CT scan and finding hair all over the floor in the changing cubicle.
Shaky and weak: sounds like it might be the steroids (dexamethasone), which are usually gradually reduced after a while - it's important that this is done slowly and in stages. As I mentioned before, the real fatigue from the WBR doesn't kick in for several weeks - the radiation takes a while to work and then goes on working. I don't think there's anything your friend can eat that will help particularly - just try and keep eating, and stay hydrated. And be prepared for a lot of resting/sleeping in a few weeks' time. It's a major assault on the system.
Reply # - October 22, 2012, 11:57 AM
Reply To: Brain Lesions – Multiple Myelom
Helper, I'm very glad your friend has gotten good news from the docs.
I'm afraid that since we don't have specialists in this field and your friend's case of brain mets being so rare that we probably can't give a satisfactory answer. But I don't know that for sure. Dr. West will more than likely respond this evening though.
Certain Spring has offered excellent advice for recovery from WBR.
All the best to you and your friend,
Janine
Reply # - October 22, 2012, 04:43 PM
Reply To: Brain Lesions – Multiple Myelom
It's extremely likely that her hair will come out, though temporarily. The weakness is typically transient and improves over a few weeks. And no, there really isn't any food that is at all likely to have a significant impact -- it's just helpful to ensure that she's eating and drinking well enough to not lose ground in terms of weakness.
We really can't speak to the myeloma and stem cell issues.
-Dr. West