Need to talk

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• April 26, 2005 at 5:02 pm #5811
  doreen

  Member

  Sorry, this may be selfish post. I know all of you are so brave and sometimes I feel I have no courage at all. I have MDS at 52 and was scheduled for a cord blood transplant. After the bmt, they found my blasts were too high and now have sent me back to my dr here for some chemo. I have an appt this afternoon to discuss the schedule, it will be as an inpatient. I am so afraid of chemo and going through this and several times I think of just letting the MDS take its course, I think its on its way to AML as least that is what they think. Is it the cowards way out to just let go. I am a single mom with a 19 year old in college. I think it would be easier if there were someone by my side right now. I just needed to vent, the last year has been so emotional for me. Many ups and downs and now the word chemo which I do not know if I can handle. Thanks for listening to me and if anyone has any words of wisdom , please share them with me. I am so scared right now.

  April 26, 2005 at 5:13 pm #5812
  sarah

  Member

  Doreen, you are among friends here who understand what you are facing and the issues you are dealing with. I will keep you in my prayers. Please let us know how your appointment goes today.Be thinking of you!
  Take care,
  Sarah

  April 26, 2005 at 5:25 pm #5813
  Donna

  Member

  Hi Doreen, It’s an awful place to be. So scary. I’ve always told myself that if I was ever given a diagnosis of anything life threatning I would try and do anything. Medical treatments have come so far. My 1st husband passed away from Cancer (aids related), my mother, last August — she chose no treatment. I had ovarian cancer that was treated surgically.
  What type of MDS do you have? Is there a chance that having the chemo would reduce the blasts, therefore making the transplant an option for you?. — It really is such a personal decision. Listen to your gut Doreen, try not to worry (easier said than done, I know). I’m sure others will post with more medical knowledge than myself, others that perhaps have experienced what you are going through. Hang in there Doreen, one day at a time.

  Take care,
  Donna

  April 26, 2005 at 6:36 pm #5814
  gemloyear

  Member

  Hi Doreen, Have you thought about checking to see if there is a support group in the Rochester or Minneapolis area? It would be great if there were. I was involved with a patient’s group in the cities area at one time for another disease and it was so helpful for all.T ry the social service dept. at the Univ. of Minn.Fairview, or Mayo to see what they have to offer.I have wondered about this myself, I would be interested in attending meetings if there is a group in the state.It’s tough when your by your self. Good luck, Ellie

  ps. Can you check while your an inpatient, there must be a social worker there.

  April 26, 2005 at 7:18 pm #5815
  Neil

  Member

  Hi Doreen,
  If my memory serves me, you have some great docs on your team. Your age is also a plus.
  Listen to the docs and ask questions and more questions. The more knowledge you have of your particular situation, the better your understanding and ability to make qualified decisions.
  MDS is a rotten disease, but there have been some advancements over the past year that are encouraging. Keep after the docs for more knowledge. Be as pro-active as possible.
  The likelihood of a cure is pretty remote, but there are treatments that will help you manage your condition for a long time.

  April 26, 2005 at 8:08 pm #5816
  Cherbear

  Member

  Hi Doreen,
  Just know that you aren’t alone in this – I know how scary and difficult all of this is. I’m praying for you!
  Love and Blessings,
  Cheryl

  April 26, 2005 at 10:20 pm #5817
  B. Greene

  Member

  We too were so scared of the chemo BUT it is doable and not nearly as bad as we thought it would be. Not fun but if you have someone to tell you what to expect and a good doctor you should get through it just fine. Suzanne will back me up on this I believe. She too was single and worried, I know, about how she would care for herself when she came home but she just sailed through it like a real trooper and just look at her now. Doing so well. I think the most important part is to get your mind set that you can do this and that it won’t be bad and then if you know what to expect this fear of the unknown is removed. I think for me that was the scariest not really knowing what to expect and you hear such stories and don’t know what to believe and what to discount. Anything we can do to help just give a shout. Barbra

  April 27, 2005 at 12:55 am #5818
  Suzanne

  Member

  Doreen, There certainly are not guarantees but it was not nearly as bad as I thought it would be. They were wonderful about keeping everything under control-even the nausea. There were about 5 days in the 1st round that I did not feel so great but it really is like having a baby- I have forgotten most of the unpleasant partsamd it was not that unpleasant. I had a rash almost all over, from the meds and I was worried about a lung infection that most patients get encluding me and I lost my hair of course. I also got tired of being in the hospital-30 days is a long time to be more or less isolated.(everyone who saw me had to wear a mask). I was lucky to be on a floor with all Leukemia & BMT patients. I got up and dressed every day and read, knitted and emailed. With a mask on we could walk the halls-even go other places in the cancer center-they encouraged us to- kept score on a bulletin board and put signs on our doors about the distances. Even tho after two rounds of 30 or more days each I would rather not see the inside of a hospital room again except to visit forum members, knowing what I know now, If I had it to do over, I would not hesitate as long as I was in a place with a lot of experience with MDS and AML-preferably a center of excellence..I have visited people getting chemo through their regular Hemo’s in a regular hospital and I have to say the care, knowledge, and experience is just not up to what I had. I heard Dr. Gore speak recently and he said MDS and AML from MDS (A category of AML all its own)is just too rare for every Hemo to be up on all the developments and complications.
  I wish you luck. It is not an easy decision. If I can answer any other questions feel free to contact me.

  April 27, 2005 at 1:32 am #5819
  doreen

  Member

  First of all, you are all so very wonderful. I cannot imagine what people did without this technology of the computer and having a support group so close at hand. I just returned from the dr. appt. Here is what I learned and of course this is a decision that I had to make. When I went in a year ago, my blasts were at 3 percent, they are now at 6 percent. My counts have remained pretty steady except for my platelets were went down to 22,000 in January. They are now at a whopping 27,000! I feel physically healthy but we all know that is the mystery of MDS. My cord blood transplant cannot be done with blasts over 5 percent and that is because they will not do anything but a mini on me (over the age of 45). I think this is the way they keep their stats on success rate is. Therefore, after talking to my doctor I can- a) wait and see but I gathered from him not a good option as he is not GOD and cannot give any guarantees or keep with the plan of the cord blood. This will require me to be admitted on Monday for he said 4 weeks of inpatient care and chemo to get my blasts down to a level where I can then go up to the U of MN to get the cordblood done. I talked to my 19 year old son.. discussed with him my options.. I can wait and see with this disease but he said, MOM, get it taken care of now. That decided for me. I agree with him. If it can cure me or give me more years, I am going to go with it. The dr. here does not think I will have a problem with the chemo. He is so kind because at the end, there was one thing he hated to tell me and that was that I would lose my hair.. I almost laughed because I so knew that! I have been trying to talk friends into shaving it for me but no one will do it! After talking with him, I felt some hope, I know my summer is shot but that is trivial to my life right now. by the way.. I alway have a caring page website. I want you all to know it as I start to depend on you. Barbara and Susanne, I especially appreciate all your kind words and rough times you have been through and I am sorry. I wish that no one on earth has to go through anything like this. You are very strong women and I admire you so much. My caring page is http://www.caringbridge.org/mn/sadieflowers/. I will keep in touch with all of you during this summer and wish you all many smiles and much happiness and good health!

  April 27, 2005 at 12:40 pm #5820
  Suzanne

  Member

  Doreen, Everything I hear from presentations says if you are high risk the sooner you have a transplant the better if that is the direction you are going to take. Also I truly beleive both processes are easier and more likely to be successful if you go into them as healthy as possible other then the MDS/AML. You have a great attitude and that too helps-It is amazing what the power of ones mind can do. Go for it girl. I think you are really on the forefront with the cord blood. I will be thinking of you for the next 30 days and watching your web site for developments.

  April 28, 2005 at 12:31 am #5821
  Jimbob

  Member

  Doreen,
  I wanted to “go natural”, stay away from transplants and use diet, lifestyleimprovements, acupuncture, naturpathic, etc. in an attempt to get this beast under control. Anything but a transplant. I was doing quite well with fairly steady improvement – until I got too cocky and overstressed myself. I had an extreme leukemic event and was forced to undergo chemo to stay alive. Then it seemed like a SCT was suddenly the best option.
  That was 13+ months ago. Today, at my check-up, the doc said 100% donor cells with no leukemic cells. I am well on my way to complete recovery and can schedule labs every 3 months now.
  If you have the option to go for the SCT or cord cell transplant, I would have to emcourage you to go for it. It may still be a rough ride but the outcome should be better than just waiting it out or any other of the current options.
  Praying for you and your son.
  Jim

  April 28, 2005 at 1:02 am #5822
  doreen

  Member

  Jim,
  Thank you for your kind reply and your prayers. I also wanted to try and beat this thing with exercise, healthy diet, etc. but I don’t think its going to work. I guess that is why we have such good doctors this day and age. I certainly appreciate your support and everyones here.
  I wish you all the very best in the future. I’ll stay in touch for sure. Doreen

  April 28, 2005 at 1:44 am #5823
  Suzanne

  Member

  Jimbob, what good news. I am happy for you. I think most of us would like to take care of our bodies as “naturally” as possible. I give you a lot of credit for what you were able to do with “natural treatments” and a lot of credit for having the courage to leave the that behind when it was necessary. Hopefully now that the transplant worked so well you can go back to taking care of your body the natural way. More poer to you!

  May 1, 2005 at 1:17 am #5824
  Terri

  Member

  Doreen Know we are all pulling for you – support and prayers are with you. I think we all get scared and are scared, even us caregivers. I wish you the best.

  May 3, 2005 at 10:20 pm #5825
  JulieMarie

  Member

  Doreen,
  With the technology please know that there are many of us here in this forum holding your hand every day and night. We are all here for you.
  My mom has been going through Vidaza chemo treatments since January, on Friday we find out if it’s bmb time or if there will be more rounds of chemo. It’s not that bad serriously. Now a days they give you anti-vomiting medicine which for my mom helped a lot the first few days. One thing that helped her was having meals made ahead of time in the freezer so all she had to do is heat them up and eat. Us kids went home to help when we could since we both work full time jobs and are at least an hour away. Is your son going to be taking summer classes? If not will he be moving back home. Hopefully if that is the case he’ll be a big support. check with your hospital. I know some have support groups for family members going through chemo so they don’t feel like they are alone.

  Hang in there, take one day at a time, All the best

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