Hi. How old is your husband? It seems that MM in older people is in the Smouldering Form and is very much different to other varieties of MM.
I was diagnosed at the age of 49 and given 3 months to live. I have had constant treatment with Chemo, Radio, Bone Marrow Transplant, various trials of different drugs. And constant pain medication.
All of this has kept me alive for 8 years but I have to say that my quality of life has been quite poor during that time. I as previously very strong, fit and healthy.
I am now at the stage where there are no more treatments available for me. The Myeloma is so active that it is destroying the production of blood faster than they can pump it into me. I am now on bi weekly blood transfusions as my platelet count is 2 ( should be 450) and my Hb is 58 (should be 180). My Free Light Chain level is around 1500 ( should be 19). Without the transfusions I would have a matter of days to live. The transfusions are becoming less and less helpful and at the stage where at a young age of 57, am about to go into Palliative Care. My best prognosis is a few weeks.
My advice to you and your husband is to keep trying everything available. Especially since he has no or very few symptoms which is normal with Smouldering MM. As I said, I have had a very poor quality of life but most people with Smouldering MM have a decent quality.
Without knowing anything about your husbands health , age etc, if I were him, I would travel and do anything and everything I could. Eat well. Gets lots of rest. Don't smoke or drink. Spend lots of time with friends and family. He could have another 10 years but its always best to live life to the fullest each day. It sounds like he is in a good position and there are many drugs that can help to maintain the MM levels and keep him living a decent life. As for you, try not to worry or despair. A positive attitude for all concerned goes a long way. Even at the end of life for me, I am NOT giving up and hope the cure or next helpful drug is just around the corner. Also, try Medicinal Cannabis Oil for pain when it gets to that stage. I have tried it at times and it is better than anything else with no nasty side effects. It's just quite expensive at the moment but that WILL change very soon now that it is being legalised for cancer and other patients.
Good luck with it all. Ash
... View more
I just posted a 'new topic' reaching out for any human contact and support for my terminal myeloma.
I don't know why or how I ended up in the situation I am in but suffice to say that being alone sux.
I am also in Sydney and have boundless enthusiasm and refuse to waste away dribbling on myself. Having said that, because of the pain, fatigue and physical limitations, my body cant keep up with my mind. I start more radiation at POW Randwick next week followed by another transplant if I am well enough. I don't want to go through this alone again.
I hope you are doing as well as can be expected and would love to chat.
... View more
Since being diagnosed with Multiple Myeloma in 2009, I have endured chemo, radiation, bone marrow transplant, huge daily doses of pain killers, several surgeries and have kept as focused and positive as possible.
Before diagnosis I was dealing with post traumatic stress from several life changing injuries in the NSW Police. I was medically discharged and despite constantly reaching out to people, have lost contact with most of my family and friends. For unknown reasons, most of the people in my life have abandoned me. My marriage was all but over before the cancer and now I am just seen as an inconvenience with no real support and no love.
I am a normal person with many life skills, talents and abilities. I don't have a mental illness or gross physical characteristic that would force people to keep away. I am not an angry person. I am kind and gentle and decent.
My life is Groundhog Day, with most of it spent in bed due to severe pain and debilitating fatigue. When I do get up to take pills I have to lay down soon after. I never get any calls or visitors. I send people emails, and letters and when I do get replies, all the right words are there but no actions. It seems that out of sight is out of mind for people. I have been on this and other forums for years as well. Still the same result.
I am desperately lonely and unhappy. The fact that my last times on earth are spent like this is horrible and being alone even without cancer is bad enough but when I get no support or contact with anyone except my dog, I pray to be taken quickly.
I am scared that my remaining strength will fade and although I could never take my own life, I also cant deal with the loneliness any longer.
I would love to hear from others who are in the same position as me with cancer and feel abandoned by people in their lives.
I just need someone to talk to or talk with. I hate to admit this but I just called LifeLine to talk to anyone, and after 20 minutes I was told that because I wouldn't take my own life and wasn't 'suicidal', that there was nothing they could do for me. I was told to speak to my doctor. They ended the call. No empathy. Nothing. I swear this is true.
Only a dying person can understand what it is like to deal with it all so I am also here to listen to others as well.
... View more
Sorry I have been hiding away for a while. The chemo has hit me hard and I have been very unwell. I have no energy to even lift a little finger. This is cycle one only. I still have 3 more to go with this new drug.
Tell me how your dad is. He is in my thoughts as you are too. I hope you are all dealing with it well. Remember a held hand is worth everything.
Unfortunately I don't get the support I need or deserve but I just make do with what I have. It is the hardest thing for me. It is the saddest thing for me. I would have so much more strength to fight the cancer with people around me. Oh well, I do what I can with what I have.
Today is the first day for a couple of weeks I have felt able to get up and do things. Hopefully the side effects will get better for a few days until the new cycle starts. So much to catch up on. My inbox is a mess !!
Stay in touch and stay well.
... View more
Sorry for the late reply. I was glad to hear that your Dad has had some pain free days. It seems that Pall Care is the best place for him at the moment.
I know fully how he feels and that his morale is low. It doesn't matter how strong a person is and how much they try to fight the disease it gets to everyone eventually.
No one knows what to do and say and you feel so helpless BUT.. there is something that you can do to help his morale and to help yourself as well.
The solution is that you don't need to say or do anything. It is so hard for you to do this but it will help.
Just be there for him. Hold his hand. He will know you are there and you are showing him love at the time of his life when he needs it the most. He knows you cant say or do anything for him and he doesn't expect anything. He just wants you with him. Being surrounded by his closest family and friends will help to pick his moods up. It will help him to fight the pain and feel a bit better.
It sounds silly and simple but that is what I want and maybe he wants it too. He is lucky to have you. Try not to beat yourself up over it.
As we sail into the sunset remember to 'stay the course'
... View more
Metastron is used to help relieve bone pain by working inside the bone itself by giving off radiation. Google will have more info.
Your Dad's pain seems so severe that this med may not work well enough. Morphine works well with Methadone and Oxycontin - well it works well for me and I have chronic and severe bone pain in many places on my body. It doesn't stop the pain all the time but takes the edge off.
The only thing that stops the pain completely is Ketamine BUT it screws the brain up big time. I got to the stage where I begged to come off the K and go back onto my previous drugs and just deal with the pain. The K was that bad for me.
Talk with the pain doctors as they are pretty good and also the doctors at palliative care. They are even better in finding ways to relieve the pain.
Hope this helps
... View more
Thanks so much for your reply. The info was very helpful and it relieved a bit of stress for me.
I was lucky to have minimal side effects from the Thalidomide so fingers crossed the Velcade will be kind to me as well. As long as I stay clear of the Dex as much as possible it should be fine as I react very badly to the Dex. Dangerous reactions. It's a nasty drug that should be prohibited.
Good luck with your new treatment. I hope you get positive results from it.
... View more
If anyone out there has experience with Velcade for Multiple Myeloma (MM) I would love to hear from you with some advice.
I have been on Thalidomide for 2 years but my tumours have grown and are getting out of control. Worse, they have spread to my head and other hip.I already have them in my shoulder, left hip, several ribs and spinal cord compression. I am only 53.
I start Velcade next week and I am concerned with the side effects.I have already had chemo and radiotherapy and a bone marrow transplant a couple of years ago but was told that Velcade is different to all of these. Also I found that I was allergic to Dexamethasone (that's a good thing) and the BM transplant nearly killed me. I was very close to death from it.
What can I expect?
Also if anyone has tumours on their skull from MM, what are your symptoms and side effects from that? This scares me the most as I have started getting headaches for the first time in my life and am getting very forgetful and confused.
If you have MM or have dealt with this PLEASE help if you can.
... View more
I am in a similar situation with pain with my Multiple Myeloma. I have had chronic pain for a couple of years now and have been under the care of the palliative care team but at home. I have morphine liquid, methadone, oxycontin and oxynorm and these have helped to reduce the pain. Unfortunately the pain never goes completely but self medication does help.
I have been in hospital several times for pain and they hook you up to morphine and ketamine and it destroys your mind. I would rather be at home surrounded by things and people I know than in a noisy sterile ward.
It all depends how bad your dad is. If he can still function at times when the pain is "under control" then being home is better for him. It is harder for you and your family though but it is more important that your dad is as happy as possible. After all, he is the one with the pain!
For me, being in hospital will be the last resort and even then, I would rather die at home surrounded by my family and dog. Everyone is different.
Talk to your dad and see what he wants to do. No one can force him into pall care. It's what he wants to do and what he is capable of doing at home.
Good luck Krystal. He is lucky to have someone who cares about him as much as you do.
... View more
I hope i am not too late in responding to this but it may help for the future.
I use Sodium Bicarb Mouthwash. It help to clean all the dry and yucky crap from the tongue, cheeks and gums. Use it as often as you like.
For the ulcers which are from low immunity and are like a type of thrush or other infection, get the doctor to give you a script for Nilstat Drops. They work really well and really quickly to kill the infection and stop the symptoms.
Between these two things, and brushing every day, your mouth should be ok even when chemo, radiotherapy and low immunity try to make things miserable inside your mouth.
... View more
Cancer Council NSW would like to acknowledge the traditional custodians of the land on which we live and work.We would also like to pay respect to elders past and present and extend that respect to all other Aboriginal people.