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Kathy Stermer
ParticipantHi Carole, I just finished my third month of Vidaza and hopeful for some results soon. Am treated by MD at a Center of Excellence in this disease. As a retired nurse who was never trained to give chemo nor wanted any myself am giving it a go as my doctor explained this treatment as low dose stealth chemo without all the side effects of full blown chemo. Side effects have been very manageable so far and counts are beginning to stabilize somewhat so hopefully you have a good doctor who communicates well and you respond to whatever treatment you decide to go with.
ParticipantHello Peter. I too have been getting injections every month and yes, burning and redness at sites. I have found using a mixture of tea tree oil and primrose oil a few times a day on the sites helps greatly to reduce the side effects on my skin. Both are available on Amazon. Mix together and add some coconut oil as a binder then keep in refrigerator where it stays solid and cool and feels wonderful at skin sites
ParticipantAs a healthcare worker I prefer a more holistic approach to treatment rather than relying on big pharma to manage my condition!
ParticipantI have been using CBD oil for symptoms for over a year now and feel it helps at times with calming pain and anxiety and also helps with sleep. In addition, have been making butter with cannabis that I bake cookies eaten before bedtime to help with sleep as it seems sometimes my mind just won’t shut down. The oil comes legally from a company called CBS Pure which I can get in the mail all legal, the butter supplies not so legal in this state (Minnesota) where I was told I qualify for a card due to cancer diagnosis but costly and limited in choices of items available. My doctor is aware and ok with my choices. There’s no downside to trying something if it works and doesn’t have major side effects as in taking pharmaceuticals. I also am getting Vidaza shots and making my own salve for skin irritation from shots which works really well to minimize skin irritation and discomfort. Feel free to private message me if anyone wanting more specific details.
ParticipantThese are results you will want to discuss with your provider to explain. Possibly a bone marrow biopsy is warranted to check your disease status.
ParticipantI have started on Vidaza the past 2 months. According to my doc who is the expert at a Center of Excellence we continue taking it until it stops working. Not sure why your schedule got stretched out so best to check with your provider for an answer to your question. Am hoping my longevity on this drug can be as long as yours!
ParticipantYour best bet is to find a physician at a Center for Excellence that is an expert at treating this disease. It’s hard to find someone with your exact numbers/symptoms as this disease is as variable as there are cells in our body. Find someone who can more thoroughly explain what is going on so you can move forward with less stress.
ParticipantThe transplant team will be your best resource for information. Maybe one of the nurses? Do you have someone who can be present with you as you digest all the information? Always good to have a second pair of ears for things of that nature. Be sure to express your concerns to the team and social worker to gain as much support as possible through your journey. And truly, best of luck in the recovery.
ParticipantIt’s your absolute neutrophil count part of your white blood cells, the ones that fight infection.
ParticipantI am only on my second round of Vidaza and still waiting for results so I can’t yet speak to its effectiveness but from my experience thus far the side effects have been quite tolerable. Other than constipation and slight nausea both manageable and some skin irritations managed by a cannabis cream I make myself, so far so good. The effects on my counts have yet to be seen.
ParticipantRose so sorry for your loss. As a nurse for 35+ years I sat with many dying patients and also a few family members at the end. You described pretty much what happens as far as withdrawing and breathing changes. Thank god you had hospice involved. Their job is to make the transition as comfortable as possible. Many don’t get them involved soon enough. You are an angel for being with him until the end and even tho it may not have seemed he knew you were there he did. Sounds like his wishes were respected to the end so find some comfort there.
ParticipantI would urge you to find a physician who you like and will work with you. There’s enough uncertainty in dealing with this disease without wondering if your doc is on the same page as you. Ask the oncology nurses where you are followed and see who they like. I always ask the question, “If I was your mom/sister who would you recommend I see?” I tapped into palliative care service right after my diagnosis last year as I knew I would be dealing with a chronic disease the rest of my life and made sure I had a doc who I could really work with and who would listen to me and what I wanted the course to look like. She’s an expert but we bounce choices off each other and truly work as a team.
ParticipantMisty, hopefully you have a good support system to respect and help you through your journey and you sound like you know the course you want to take going forward. If you have access to a palliative care service they can be of great benefit helping you navigate life forward and dealing with the physical as well as emotional hurdles to come. As long as you are at peace with your decisions my hope for you is to enjoy everyday you have as really that’s all any of us has , today only. I for one have a similar plan as yours when my treatment ceases to prove effective any longer and am at peace with that. Wishing you all the best.
ParticipantHopefully you are at a Center of Excellence for treatment. Sorry to hear things are so stressful for you right now. Do they have a palliative care department or patient navigator to help you sort through some of your questions? Might be a good place to start. Wishing you luck. This isn’t an easy journey for patients or their caregivers.
ParticipantI just finished my first week of Vidaza a few weeks ago. My experience has been some nausea on day 2 and by the 5th day I am zapped of energy but hgb also low. Also, next round going to start taking senna so I don’t get so constipated which was fairly significant. Just listen to your body, each of us will respond differently. Definitely felt better week after treatment done.
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