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Every disease particulars are different but I can give you figures I was told by my physician whom I like and respect. I have advancing MDS heading to AML and have not responded to either treatment tried. My only choices at this point is transplant or clinical trial neither of which I have chosen to do. Statistics in my case are 50% success of transplant and 30% chance of relapse. That being said, success does not take into account any fallout from transplant side effects ie GVHD, any organ damage. It’s not like getting an oil change! I personally know someone who had a transplant at age 26 and was considered a success but lived 6 hrs on oxygen as GVHD took out his lungs and ended up with a double lung transplant now 4 yrs out and quality of life at age 35 still not great. I have been off all treatments since last September – no wish for a transplant or clinical trial and have to say, despite advancing disease my quality of life has been pretty darn good. It’s a personal choice for everyone but make sure to get good information and understanding of everything said before making a decision. Get another opinion if need be.
Hey Mark, we spoke on the phone when you were first diagnosed. It’s a tough decision to go through with transplant or not and you do need to have someone available to help in a caregiver role. If you’re connected to a transplant center don’t they have social workers or care coordinators to help you navigate this aspect if considering transplant? Am sure there are others in your situation they have been able to help. You have to be your own best advocate and push for what you wan/need. Where I worked with transplant families they also had “care partners” people who volunteered to help those who needed it. Keep asking what options are available to you.
Thanks for this info. I’ve had to stop chelation drug due to low platelets and get 2 units every 2 weeks so will give this a try. What’s the worst that can happen? Prefer a more natural approach than that nasty, expensive drug anyway
My MDS has progressed over past 2 years now heading towards AML. I have failed to respond to treatments, have been followed by palliative care since the beginning of diagnosis, and have now gotten my affairs in order. Just turned 62 and trying to enjoy the time I have spending with family and friends. Have to say, now not feeling bad side effects of treatments and quality best now. I have accepted the inevitable of this disease and have faced what is to come for all of us. My family is completely supportive of my choices and am at peace taking it one day at a time.
I am 62, diagnosed 2 yrs ago and after failing 2 treatments am now progressing to AML. As a retired nurse who knows the risks of transplant have declined and am doing supportive care. Have been followed by palliative care since diagnosis which has helped me and my family, am now at a point of enjoying my friends and family as my only priority, getting blood products when feeling the need. I have hospice all set up when I reach the point where I don’t want to continue even transfusions, my affairs are in order and I’m at peace that I’m ready to journey into the final stage. This disease sucks and there’s no stopping it so I have decided long ago to take control of how I want things to go from here on. I’m truly at peace with things as is and accepting and prepared for what’s to come. Ongoing discussions with my family making my wishes clear has brought me to the peaceful place. Hopefully you’ll find a good place also
Mark, send me an email @ email@example.com and we can arrange a time to chat.
Mark, these are all normal feelings and things I have thought about in relation to my life as well. It’s true that anyone who chooses to go through a transplant needs to have a caregiver who can make a commitment for an extended period of time. I have a good support system of family and friends but can’t imagine asking any of them to drop their life and attend to me if I was ever to choose the transplant route (which I’m not). The donor registry chances are good for a match for most. The statistics I’ve been given for transplant success is 60 percent chance of success and 40 percent chance of relapse. Disease or not, we all only have today and I’ve just chosen to do the best I can with what I’ve got to work with. Have to say though, trying to do this while self isolating is pretty lonely. Miss seeing and hugging my family and grandkids, being with others in general (those that are healthy) but as we’ve been told, “assume everyone is infected” right now.
Mark, I too am dealing with this disease which has many variations as there are people who have it. I just turned 62 and am being treated at a Center of Excellence currently doing supportive care only ie: get my labs checked when I feel I need to by listening to my body and get blood when low. They tell me the disease won’t kill me but an infection most likely will so I try to stay safe in that respect. COVID puts a whole new spin on that of course. As a nurse I know too much how this can go which is a blessing and a curse. Would be happy to send you my contact info if you feel a phone conversation of benefit as I’ve entered my second year of living with this. Have tried 2 treatments both without success and only supportive care my choice at this point. I value quality over quantity and am trying my best to live each day to the fullest.
I stuck it out for 6 months on Vidaza after failing to respond to Revlimid after a year. The Vidaza did nothing but cause my counts to tank and I didn’t feel good most of the time. Have intermediate 1 and have been off everything since the end of December except antiviral and transfusions when needed (which was every 2-3 weeks but now have been going longer before needing blood). Not spending time at so many appts and feeling better more of the time than not has made my quality of life much better. All I know is this was the best choice for me. Odds of a successful transplant not good enough and clinical trial too much time involved in hospital so will continue on as is and live life to the best I can for now. It’s a confounding disease which has a different course for each of us. Wishing you luck.
Simone, so sorry for all your going through. Besides all the emotional and physical aspects of dealing with all you are, it’s so distressing to hear you don’t feel you’re getting adequate information and support from your caregiving team. This disease is frustrating enough by itself without having to deal with all the other components of your health. Wishing you the best and hopefully you will find peace, dignity and some answers to what you need.
As stated above, everyone reacts differently as each disease components unique. I tried Revlimid without any positive changes and switched to Vidaza also without any results. After 6 months of treatment, decision made to discontinue drug. While taking experienced further dip in already low labs (hgb and wbc), fatigue and local soreness at injection site. Was not excited to start chemo but gave it a go and am currently doing supportive care only (transfusions when needed and trying to stay infection free). Listen to my body. It’s an individual decision and results vary from person to person. For me my overall quality better but also know options limited for treatment outside of transplant which I’m not interested in due to my long career as a nurse and guess I just know the full impact of such a big decision. Gather all the info you can and decide what’s best for you.
I too hate living with this disease Alan. In my case have tried 2 types of treatment without any results except worse labs than I started with and feeling crappy more times than not. Currently only on treatment to help prevent infection and transfusion of blood when needed. Have to say my quality of life has been better. 5% blasts on last biopsy and the odds with transplant just not good enough for me. Told my doc I’d rather die living with this disease than die trying to survive a transplant. Too many things to go wrong and with 40% relapse odds I’m gonna enjoy whatever time I have not being pumped full of drugs, chemo and radiation. No idea how long I’ve had this or how long I have left but gonna do it naturally. BTW, am retired nurse very familiar with transplants and good and bad outcomes. Just my personal take and decision here so keep gathering information and best of luck.
Kathy, I can only give you my experience with CBD. I use 1,000mg bottle and take 1-2 droppers when I need it. It’s very arbitrary based on your response as it helps many and some not at all. Being in Cali you should have many choices available to you.
Am no longer getting shots but when I did kept skin issues to a minimum using salve I made and it worked really well. Has to be applied frequently though. Put half cup of coconut oil, half cup hemp oil, 5-8 drops tea tree oil, 8-10 drops peppermint oil and splash of primrose oil. Use good essential oils and simmer in double boiler about an hour. I kept in fridge as cool felt good also. Sometimes got angry red bumps at site and soon learned to just keep putting salve on and it really did the trick for me
My physician tells me they are the same thing. I am currently taking the generic of exjade and have been tolerating it ok. My ferritin has gone from 1600+ down to 1000 in 3 weeks. Tastes terrible and only way to thoroughly dissolve is in a small bit of hot water and then add cold mixer and slug down. I use coconut water with mine. I am also very conscious of drinking lots of fluids (90oz) following as it gets filtered through kidneys. As I’ve not had any nausea issues thus far have been taking first thing in am as needs to be on an empty stomach. Good luck