December 5, 2016 at 1:21 am #93514debnorcalModerator
Thinking of you, Julie, and sending prayers for strength and healing your way.
DebbieDecember 4, 2016 at 11:41 pm #93513
Thank you everyone for your comments and encouragement. Right now….I’m in a holding pattern…….feel like I’m waiting for the other shoe to drop on this. I don’t hold out much hope for the Vidaza …the drug they are going to use for the MDS…..but I have to do it. The hematologist said that since this was caused by chemo…it’s less likely the drug will have any effect.
JulieDecember 4, 2016 at 2:28 am #93512mbachiniModerator
Oh sweet Julie, I am so sorry to hear this news. I will be praying for you like crazy. I have always followed your posts, and have been absent from the boards for several months and am now just catching up again. Sending much love and hugs.
MelindaDecember 2, 2016 at 9:52 pm #93515
I’m getting there….found a Facebook page for MDS patients and also there is a Foundation similar to ours here. Of course, it is set up way differently, and I am going to have to learn how to navigate that one. Looks far more complicated …which makes me appreciate the CC Foundation website all the more. Can’t look a gifthorse in the mouth though……just means I have to buckle down and study harder. For now….I’d say that I’m part way there to the “fight” that I need. I have found a few things in my research so far to give me some reason to hope a little. Found a gal whose father had lymphoma cancer diagnosed a year ago and fought through that…only to now be diagnosed with MDS…..which means probably similar to my version….therapy induced MDS from chemo…..and wherever her father is a patient, they are already looking at bone marrow donors and getting the ball rolling on a possible transplant. If that is the case…..I don’t see how my two recurrences of CC is really much different. There’s no guarantee that guy’s lymphoma won’t return any more than there is any proof my CC is going to return. Right? Am I missing something here? Anyway…you know me…..I asked where her father was a patient and hope to hear back.December 2, 2016 at 5:01 pm #93517darlaParticipant
You go girl! With that great attitude you can’t lose. I know how hard all of this must be for you both mentally and physically, but you are strong and I truly believe you can do this. Keep fighting. You are worth it.
DarlaDecember 2, 2016 at 11:20 am #93518middlesister1Moderator
This is really lousy and my heart breaks for you. I’m sorry you’ll have to, but I know by Tuesday you will have done your homework and have your boxing gloves on and ready to fight.
Thought s and prayers are with you,
CatherineDecember 2, 2016 at 4:24 am #93516
Everyone….in all honesty, my one big goal really….right now…..is to dial back the crying. I am by nature a very emotional person . It is who I am. I remember years ago, when in a dispute with the head of the large manufactuing company for whom I worked……I defiantly sat there across from this big whig….and told him, “I may be crying, but damn’t, I’ll fight.” That’s the place I’m trying to get to right now. I can say that today is better than yesterday. There is “less” crying and more digging in and discussing with hubby to make some plans. I will soon start researching this MDS thing more than I already have, so that when I go back to Mayo on Dec 6th (Tuesday) I might be better armed to discuss this at the Transplant Team consult.
Basically, the hematologist sounds like he expects the team to say no to any transplant for me due to having CC ….esp with two recurrences within the last year. But, the alternative is that I die….plain and simple. Since we at least are going to have the consult, the answer isn’t no yet. And…it may be that I do not survive to get the transplant. It is better to be in healthier condition for the transplant.
I want to make it clear to anyone here who is wondering about the chemo I used. It was Gem/Cis. Although one doctor (an oncologist) has told me that it is not on the list to cause MDS…..here I am living proof. The current hematogist expert has said it was the chemo. Something else I read said that various cancer treatments including for gastrointestinal cancers are not often the cause. So, yeah…..looks like in my case…..the chemo IS the cause. My numbers were fine before the chemo right through the 4th round.
This is sort of a game of “should have”. I went ahead with the other two rounds I was encouraged by oncologists to do…..(though one did tell me that I did not HAVE to do the last two rounds….no proof it would really do anything and all that). However, I felt a lot of pressure to finish the 6 full rounds…..from other oncologist…..and thus I did. That was apparently when the major damage was done. At the time, I told myself that I never wanted to look back in case the cancer returned…and say, “I should have done those last two rounds…maybe it wouldn’t have returned>” But…..now, I am saying, maybe I shouldn’t have…..and then maybe I wouldn’t have this killer MDS to deal with .
All the should haves and shouldn’t haves don’t really matter in hindsight. The fact is, that I am where I am with this…..and I must deal with it head on. I want desperately to hide my head in the sand and pretend it isn’t there, but when my hemoglobin drops again, I will be reminded just how fragile my blood system is right now.
I fought too hard to get to where I am with the ICC…….two years 11 mo and despite two recurrences, I am currently NED….no evidence of disease. That could change in a heart beat……but I’m hoping this continues at least to not be a complication in treatment for the MDS.
Now now……I will be trying to research to figure out just what about having an underlying cancer (that is currently NED) would cause the transplant team to say no.
Julie T.December 1, 2016 at 3:30 am #93519darlaParticipant
I have been following this and had hoped for a better prognosis. You are so strong and have dealt with everything so well and now to be hit with this is so unfair. I am still hoping for the best for you. Just keep dealing with it one day at a time and enjoy each day as best you can. My thoughts are with you and lots of prayers, too. Please up date us on how you are doing when you can. We are all here for you and truly do care.
DarlaDecember 1, 2016 at 2:42 am #93520
News today at Mayo was not good. The hematologist informed us that my MDS was aquired through drug therapy (aka chemo) and as such, it is the most aggressive form of this disease, which is actually a form of blood cancer. And….wouldn’t you know, it also has a bad prognosis as well…..doesn’t respond well to the only therapy because the chemo drug actually caused it. The mutation I have…four of them….make my case pretty bad as well and up the anti on the prognosis. I am considered an exremely high risk. It isn’t good. I am going to start on a drug probably next week to try to bring this into remission, but it often takes 6 months to see any positive effects IF it works. Meanwhile, I will be dependent on transfusions for red cells and platelets. My white blood cells are of adequate quantity, but they are mostly immature. This disease is one of bone marrow failure….it is neither making adequate numbers of cells nor are they normal in size or shape …or even in some cases nucleuses. If the drug doesn’t work….or if I achieve remission and it stops working (which is always does), then I would need a bone marrow transplant. However, because of the CC, the doctor today told us that I would probably not be approved for the transplant. I figure that what do I have to lose at that point. I either die then….or try the transplant and die trying….or live by trying. That apparently isn’t how the transplant people see it. And….the most dismal is that the median survival time (including those who do transplants) is 12-24 months. This is just devastating. After everything with the CC that we’ve gone through……just to the point where I felt i was living life again and maybe had a chance to beat the CC……and here we go again. prayers please.December 1, 2016 at 2:32 am #93521bgmat48Participant
I am so sorry about your results Julie. I hope the Mayo doctor has a treatment for you. Thinking of you. Stay strong. Sending you big hugs xxNovember 30, 2016 at 6:19 pm #93522gavinModerator
Sorry to hear this latest news from you about everything and you know I will be keeping everything crossed for you. I so hope that you will catch a break and get some good news today at Mayo. Please know that I am thinking of you loads.
GavinNovember 30, 2016 at 5:06 am #93523debnorcalModerator
I know it’s not easy, and you have already been through so much, but please try to put any thoughts of cc out of your mind so you can focus on treating the MDS. I am hoping the hematologist at Mayo can help you get this under control quickly. Sending healing thoughts your way.
DebbieNovember 29, 2016 at 1:39 pm #93524lainyParticipant
Dear Julie, You know how I feel and I know you have the strength to make this trip to Mayo and have them fix what is wrong. Yes, you have been through so much and have already crossed many bridges and I am convinced you will cross this one as well. Take it all one hour at a time and you will be the little engine that could. Tell the little man, Robert that you are that little engine. Just one more day and you will have answers. I am with you all the way!November 29, 2016 at 10:51 am #93525middlesister1Moderator
I am so sorry you have to face this after you’ve been through more than your share of Yuck. Fingers are crossed that you get to Mayo tomorrow and they can fix you up.
Lots of hugs coming your way,
CatherineNovember 29, 2016 at 4:29 am #12802
On Saturday afternoon, I went to the ER because I was having problems breathing …out of breath even when talking. Since Oct 26th, when I had my regular 3 month scans and blood work, my blood counts…specifically the hemoglobin and platelets.
On Friday night, blood tests from earlier in the day showed my hemoglobin at 8.5 and platelets at 39K. On Saturday night in the ER, the hemoglobin was 8.2 and platelets at 36K.
I was admitted to the hospital and got one unit of blood that night. The next day, instead of going up the expected one point in hemoglobin, it went down to 8 on early Sunday morning and platelets went down to 28K. It was decided that I would get another unit of red packed blood cells on Sunday to see if that would raise it.
This morning, the hemoglobin finally went up to 9.3, so I was dismissed this afternoon. The platelets didn’t change from the 28K.
Mayo Clinic has diagnosed me with MDS (Meylodysplatic Syndrome) …on top of the intrahepatic CC I already have (though current NED, thank the Lord). They saay that is the cause of my count drops, though mine appear to have been in a free-fall. MDS is a type of blood cancer…..though it isn’t often looked at that way by everyone.
I have an appt on Nov 30th to meet with a hematologist who is a specialist /expert in MDS at Mayo Rochester. The idea was to get my hemoglobin high enough that I would be able to make the trip to Mayo.
Tonight, I am running a small temp, but still under 100 degrees I was told to watch for. This is probably a reaction to the blood transfusion? I may be making another call to my GP and headed back to the hospital .
On Nov 2, I had a bone marrow biopsy, and it showed this MDS with 5% blasts. At 20% blasts, you are diagnosed with a type of leukemia,, Acute Meyloid Leukemia. I also have 4 genetic mutation they found and anything more than one gives an increasingly bad prognosis.
Right now, I”m pretty scared….because the counts have crashed so fast……I am praying that counts stay up enough that I can get to Mayo and that they have some kind of treatment for me to start very soon for this MDS. If the CC comes back, this really limits the possible treatments I could have for a cc recurrence. I’ve already had two recurrences. Just really scared right now.
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