MDS is a bone marrow failure disorder
MDS is a blood cancer
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Welcome to the MDS Patient Message Board. We hope that you will find this to be a very valuable resource in your journey. We have recently revised the format of our forum to be much more user friendly and pleasing on the eyes. Let us know if you have any problems, or if you have additional suggestions on how we might further improve our site.

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Viewing 15 posts - 1 through 15 (of 33 total)
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  • in reply to: Any MDS patient having hot flashes (NOT menopause) #54983
    Kathy Lynch
    Participant

    YES! Mine are also head and neck. I’m 68, 3 years into my MDS journey. Mine are also head and neck. Much worse than when I went through menopause almost 15 years ago! I have taken effexior for my Chemo induced hot flashes for the past 15 years…it worked great until the past year. See GYN and Oncologist next month… this and my almost daily headaches at the TOP of my list of issues!

    I’ll post what I find out then!

    PS I live in a very hot summer climate. 🙁 One of my great joys is gardening…. I can only be out in the heat for 15-20 minutes…..Can’t wait for fall and winter!!!!

    • This reply was modified 1 week, 1 day ago by Kathy Lynch.
    in reply to: DRUG FAILURES #54919
    Kathy Lynch
    Participant

    Congrats Kathleen!
    My oncologists does not feel anther BMB would be helpful at this time…as long as my numbers are holding. Stanford only does them with no drugs or even twilight!! Not real anxious to have one without.

    I am considered too “mature” for a transplant Seriously! I’m only 68… LOL But according to all the “experts” I won’t make it to AML before it takes me out.

    Strange about the cluster. I hit the top 3 ways to get MDS… Chemo and Radiation 15 years ago and 20 years working in a very smoke filled environment. As the docs say “there’s no way to tell what caused it but you do have the top 3 qualifiers.

    Hugs,
    Kathy

    in reply to: How do I know when the, #54918
    Kathy Lynch
    Participant

    Thank you all for sharing. It is SO important! I was diagnosed 3 1/2 years ago in a routine blood test at the age of 65. NO symptoms. I was told I had LOW grade (silly me I thought that meant it was not bad) and told I had roughly 5 years. I’ve been on ARANESP for a year. My numbers have been holding… but I now have daily headaches, not a big appetite (but NOT losing weight 🙁 lol!!!) and I am really tired 24/7. Blood work next week…
    One of the most frustrating issues is the ending. I want to be as prepared as possible, to make it as easy as possible for my family. I 100% believe in Hospice…but I think most of us want a heads up on the last leg of our journey.
    Big Thanks and Hugs!

    in reply to: DRUG FAILURES #54885
    Kathy Lynch
    Participant

    Thank You for sharing… i am 3 years in, low risk. I have been on Aranesp for close to year… so far holding my own…but getting almost daily headaches and more tired. I know we all have MDS but our journeys are so different. I had breast cancer 15 years ago, lumpectomy, chemo and radiation. It was pretty easy to find other women who had a lot of the same “issues.” After the year of cancer life has been good. It was so weird to find out I had a rare cancer 12 years later. Doc said I was lucky those who get MDS after their initial cancer usually get it within 10 years… wooppie!!!!

    I love my oncologist…but he only has a couple of us with MDS …my MDS doc is at Stanford and I am not an exciting case.. LOL so it is hard to ask any questions…and when I do I always get “Everyone is different and respond differently???” So at times it can feel lonely… being able to read and share here helps a lo!
    As “they” say we don’t have expatriation dates on our foreheads!!! Hugs!

    in reply to: with MDS, ending my life #54753
    Kathy Lynch
    Participant

    I’d like to offer to anyone who is wondering if or when to call Hospice… I would say call a couple of them near you. Meet and discuss what they offer. It is not just the end of life decisions, they are also for the journey, even when it is not expected for months. They can be very helpful with so many decisions.

    in reply to: with MDS, ending my life #54583
    Kathy Lynch
    Participant

    Dear Anita and all who are thinking about stopping treatment, We each have our own journey. The advice to share your needs and wants with your family and close friends is important. Saying all that we need to say….telling those we love how much they mean.
    I helped my beloved step-father make his decisions before he got too ill from bone cancer. While is was hard for our family , it was a time of great love and peace for all of us.
    I am 68 and in my 4th year of the MDS journey. While I am holding my own with Aranesp the day will come when I too decide that I am finished with the journey, if God doesn’t decide first. I can only hope I have as much grace as you all and my “dad” showed. Thank God for Hospice…they can make the decisions and journey so much easier…

    in reply to: Fortero injections and MDS #54582
    Kathy Lynch
    Participant

    Hi, If she has ever had chemo she should not get forteo. I was on it for almost a year until a new doctor stopped it. I didn’t have any real side effects. Now on reclas just one shot a yeat for up to 3 years. God Luck

    in reply to: Start treatment when no symptoms? #54208
    Kathy Lynch
    Participant

    MDS is SO frustrating! Has your husband been to see anyone at one of the MDS centers of excellence? When I was diagnosed 2 1/2 years ago my regular oncologist said I should start drug treatment…went to one of the centers, they said I should do the wait and watch. I started on Aranesp 8 months ago when my HGB stayed below below 10 for a couple of months… after 5 months my HGB went up to 12 and has been holding for the past 3 months….so back to wait and watch. With his WBC so low he is really subject to infection and with his RBC low he is probably is also tired… Since most oncologists don’t have much background in MDS…if at all possible I would get a referral to the center closest to you…mine was 100% OK with me getting a second opinion from one of the centers. Good luck!

    in reply to: Not given much info #54207
    Kathy Lynch
    Participant

    Hi, I agree with everyone…totally worth a trip to one of the centers of excellence. Be prepared for lots of more testing…theirs are much more in depth.
    I LOVE my oncologist but MDS is on the rare side and not many general oncologists are familiar with the complications of MDS.
    My doctor could not give me a complete diagnosis…so I went to Stanford. I was also diagnosed as a low risk and was put on a wait and see for a year, then put on Aranesp…it has been working for 6 months.
    One of the things I learned was low risk does not mean what one would think it does…it is just part of the rating system, it does not mean that is less serious diagnosis.
    Have you gotten the information packet from the foundation?
    Good Luck…your husband is lucky to have a wife who is willing to do the digging to figure out the best course! Hugs to you both

    in reply to: Effexor xr #54206
    Kathy Lynch
    Participant

    Hi, I have been on Effexor for 13 years for the bad symptoms of menopause after chemo put me back into it. I think only a doc or MDS advisor can answer your question…but I have been told there is not much that can effect (make worse) our MDS

    Are either of you being treated at a center of excellence? I have a very caring oncologist but not a MDS specialist.

    in reply to: ADVICE REQUESTED #54022
    Kathy Lynch
    Participant

    Hi, Because not one of us has the exact same type of MDS it is hard to say what will work for anyone.
    I will be 68 in 2 weeks, and was diagnosised almost 3 years ago. Did the wait and watch until last summer, then went on Aranesp. I received a shot every other week for 2 months, then went down to once a month and am now back in a holding pattern with my RGB count at 11.7 up from 8.1 ! A little tired and achy but overall doing well!

    Good Luck and Stay Safe!

    in reply to: COVID VACCINE #54021
    Kathy Lynch
    Participant

    Hi, Today on the Webinar Dr. Raza one of the top MDS researchers in the world said we NEED to get the vaccine. Because of our MDS we have weakened immune systems and getting COVID would NOT be good.
    I got my first Madera vaccine this week. It is supposed to have the least side effects. Just a very sore arm…my husband got his last week no symptoms at all.

    Take care and stay safe!

    in reply to: COVID MDS #54020
    Kathy Lynch
    Participant

    Today on the Webinar one of the leading researchers for MDS Dr. Raza stated that we should defiantly get the vaccine! Sadly many oncologists do not have the up to date information on MDS because it is on the rare side and is very complicated….it is almost impossible for 2 patients to have the same variables of MDS.

    in reply to: Tiredness #53966
    Kathy Lynch
    Participant

    You have asked the preferable question! As Kevin said there is no good answer…WELCOME to the number one answer pertaining to MDS! What is often frustrating and a bit scary is almost none of us have the same symptoms to this disease or it’s treatments.
    Kevin is right, one of the most important things we-you have to learn is to listen to your body and give it-YOU what you need. For many of us learning that it one of the hardest lessons. I have always been a 100 mile an hour person… I have HAD to learn that I can no longer do that. I am one of those who now is tired most of the time…frustrating but ti is what it is and fighting it gets me nowhere…trust me I tried! I am not a overly (?) religious person but I really feel like God has said “I NEED you to pay attention…time to take care of you!” Good luck with your treatments….

    in reply to: What do people without families do? #53156
    Kathy Lynch
    Participant

    Hi Fellow MDSers… A great place to find help in any city is at Care.com! You can find just about any help for any amount of time… rates usually run from $15.00 to 25.00 an hour.
    Good Luck with lots of “air” hugs and prayers!

Viewing 15 posts - 1 through 15 (of 33 total)
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