iowagirl
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Dear Latenightalumnus…..welcome to the CC Foundation boards. From a patient perspective, I can tell you that the people here are wonderful . We don’t have all the answers but nobody does.
It is certainly worth getting another opinion from Mayo , especially since they are so close by you. I live in East Central Iowa and drive the three hours up to Mayo quite frequently….or …well, my husband drives me up there.
What you are feeling is very normal. It’s okay to be sad some…..to be angry even. You may go through all sorts of emotions and it can be overwhelming. It’s normal to think about the things that your dad might not be there to experience with you. As a patient, I am doing the same things…..already thinking about what I will miss as well. As a family member/caregiver, it is important to take care of yourself though or you won’t be able to help care for your dad either.
No, it is terribly frightening to hear that you have 6-12 months to live. I recently got that prognosis (another cancer besdies the CC) and I can tell you it’s devastating for the entire family along with the patient. My family is doing everything right now to create “fun” times and good memories for themselves and for me.
Julie
Change of DIrection: I have decided that on reviewing everything…..there is nothing that can’t be researched, discussed or done other than starting the VIDAZA for this MDS in January instead of now, just before Christmas. I HAVE to start the drug….but the rest…..nothing is going to change between now and in January anyway….so I’m going to try to just let it sit and simmer. I know I won’t forget aobut it….how can you when you ‘ve already heard the terminal diagnosis…..and you are going to start a new drug at the local cancer center. Each trip there…or each drive past…..is a reminder. BUT….I am not going to let any unnecessary MDS cancer stuff take away one minute more from our Christmas than it has to. I’m going to bake Christmas cookies and decorate them with my grandson, even if it takes me three days to get the batter made and cookies baked before we frost and decorate them. The same with the gingerbread house I wanted to make with my grandson. I will buy a prebaked kit, instead of baking my own, spend an afternoon gluing it together with frosting and have him over another day to decorate it with candy. And yes, I will have extra candy on hand so we can eat some. Screw the diet. I will have Christmas goodies and make some of the family favorites….and have a session with my DIL so she knows how to make them in the future. There are at least two parties to attend…..and I plan to go. It’s going to be hard when people ask how I am, but as a good friend recently told me, I will just answer, “Getting along.” That pretty much covers it anyway. And if someone says I don’t “look” sick, I plan to answer a simple, “Thank you.” Anything more than that….they pretty probably don’t want to know anyway and it isn’t appropriate for a party conversation. We are going to enjoy this Christmas…..as though it could be our last…..but not in desperation. I want things to be as normal as they can be….as much like any other Christmas doing the things we and I normally do. I know I will have tears off and on…..but I can’t stop that. I’m a sensitive and sentimental type and cry at even smaltzy commercials on Tv…..thee’s no way I can not cry about this sometimes. My close family is trying to come to terms with this new diagnosis and prognosis themselves…..and we’re all a family of criers. OMG>…can you imagine this? But, I’ve watched my usually very sensitive son, (my only living child) with whom I am very close go from barely dealing with his emotions to becoming my pillar of strength. When I recently had a meltdown, he held me in his arms and stroked my hair. My DIL…also a sensitive soul, who has become my daughter in every sense of the word…..is becoming the strength of the family, trying to focus on what cheers us instead of the bad news. What cheers me? ……those two little grandsons…..and that will be my focus this Christmas season……as well as through the rest of this. They make me smile and they make me forget for a while the other cares and troubles. I will spoil them rotten and buy too many toys…..and give them too much candy and cookies….well, in moderation maybe.. And…on Dec 24th and 25th, we will celebrate the birth of the Christ Child and the promise of everlasting life.
Marilyn, that just sucks that the treatmennt for another cancer probably caused your husband’s CC. I just feel like this is something that we patients (and caregivers who are helping make decisions,) should be made aware of…..esp when the chemo is given after a potentially curative treatment. I would have had a longer and deeper discussion about this if I’d known MDS existed with such a devastating prognosis. (Who figured another rare cancer). If there had not be the opportunity for surgery, then chemo would have been pretty much the only choice. But….that wasn’t the case here. We could have done the four rounds and stopped…..but I was pushed to do more even though there were obvious signs of problems….and I asked about them. I know….what’s done is done…but right now, I don’t want anyone else to make this kind of decision about adjuvant chemo without having ALL the info. I was told that IF something happened in my blood, it wouldn’t be for 20+ years. I figured that at that point, I could deal with it…a long life and all that. It sort of feels like bait and switch. I know……many people do gem/cis and never have this happen…..but I feel it’s something patients should be made aware of…..esp when there is almost nothing to do for it. At any time….there are things the doctors just don’t know…..such as the effects of the gen radiation your husband got……but when they do know and it’s rare, so they don’t mention it, then patients can’t make a full decision. I know if I’d have known, I would have taken my chances with the 4 rounds instead of 6 rounds. I did have recurrences…two so far, even with the 6, but my local oncologist said that there was no proof that 6 rounds was magical. Obviously it wasn’t. Sigh. …..and now this.
Something that really bugs me….is that this MDS disease is an indirect result of the CC. The CC caused me to do the Gem/Cis chemo….and the Gem/Cis chemo caused this MDS. It isn’t going to happen to everybody who has taken Gem/Cis, but I was floored to hear that you have a possibility of having it happen up to maybe 20 years post chemo. Why is it that I never heard of this possibility before I took the chemo? I may have decided to only do the 4 rounds instead of 6 (it was the 5th round that everything went haywire with kidney function, blood numbers dropping, needing a transfusion, etc). But instead, I was encouraged by my main oncologist to continue on, though the local oncologist questioned whether I might want to stop). I was told by my oncologist that the chemo “might” give me another cancer of the blood many, many years from now….a chronic type of cancer. But, I don’t remember anything that sounded like this.
Thank you all again for your responses, prayers, thoughts…….it means so much.
Marion…yes…..I know I can opt in or out. This drug isn’t like heavy duty chemo…..very werid stuff…..but can be given as shots under the skin…abdomen, arms, thighs…..similar to an insulin shot. However, it does often cause nasty welts where it is given. I could also get it via IV or a port. The IV would be hard on me as my veins are not very usable or findable (so I’m told by some of the best at inserting them) and after my first experience with a port, I’m not really excited about going that route. However, it wold alleviate the bad skin situation if it happens. There is some thought also that the skin injections might protect the internal organs more as well…..a lot to consider. The main side effects of the drug are fatigue (from dropped hemoglobin mostly) , extreme constipation, and dropped blood counts, the latter requiring a lot of transfusions at the very least…..though they try to avoid as many as possible.
The answer from Mayo today about a bone marrow transplant was, “No.” There were many reasons…..not the least of which, I have to be in remission from this MDS first and that is what this drug, Vidaza, is for. Beyond thata……the underlying CC is a big stumbling block …..and beause of the immune suppressant drugs needed in a bone marrow transplant…..it may cause the CC to become more active and aggressive. The probability of dying during the trasnplant itself would go up to 50-60% and complications due to co-morbidities are also a factor they are looking at.
If the blood cancer does not go into remission, then my options are extremely limited right now. They would try sequencing my DNA in the bone marrow to look for a targeted treatment…about a 5-10% chance of finding something….not to say if it would work. Then, the only other option would be a clinical trial , for which I won’t qualify for most….because of the underlying CC. They said that for most studies, I would have to have no recurrences for 5 years….and far before that…the MDS would have killed me. There are a few phase one studies…or rather, I found one at MD Anderson….for which I would qualify……but I know nothing about it. It wouldn’t be something to do right now…..not without trying the Vidaza first.
I may get a second and third opinion at MDAnderson and Seattle…..both of which are centers of excellence and top hospitals for this cancer. I had already come to that conclusions…and was glad to hear that the Mayo guys said that also. I don’t know how much good it would be right now…..as I’m quite sure (after the research I’ve done) that they would all say to do the Vidaza first. But….after Vidaza……it becomes then more of a question what other places may have to offer and going to those for consults may be necesary.
If I do nothing….probaby 12 months….and if I do the Vidaza….maybe 24 months if it works.
I know right now that my words are probably coming across as controled and calm….but inside, I am very angry……I want to throw and break things. The feeling is so intense that it surprised even me. I’m going to try to get in to see the therapist I saw while I was taking the CC chemo a couple years ago…to see if she can help me deal with this emotionally.
So….here I go again. My head is swirling….hard to gather in the facts….and deal with the emotions. But…..can’t waste time.
Julie
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.
Julie
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.
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.
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.
Brigitte,
Wow…..l would LOVE to have that many grandkids, but with only one son, I don’t think that will happen. I think they’re done with two boys. LOL I am very fortunate to have them…and for them to be close to us though. It’s very special to us that the little boys “want” to spend time with us and ask for special days at our house. Whenever they are sick though…..we have to make do with Facetime and that will probably be more the case as time goes on with this MDS thing.
No word here yet as far as the cytogenetic tests from the bone marrow biopsy, but, my platelets actually rose 9000 points last week, so I breathed a little easier knowing that they weren’t going further down. The news could still be not good….but having the local, weekly blood tests has helped me emotionally, anyway.
I will be praying for that ablation for you in January. If you can get it done….by all means…I would go for it. I had it done on the last recurrence in August and am so glad now that I did that instead of more chemo. Even my surgeon said to do it instead of a resection….as it would save more of the good part of the liver. And….recovery from the ablation was very easy on me. Some people have more pain….but mine was just for about 24 hours ….two days after the ablation and it resolved very quickly. In general, it hurt when i coughed…or breathed in deeply . I’m sure it had something to do with the fact that they are messing around close to the diaphragm .
Right now, I’m recovering from having a big molar extracted (it had fractured under a crown) and frankly, that’s the worst pain I’ve been in for a very long time….right up there with some of the very worst ever. Even numbing agents injected into the gums only worked a fraction of the time they were supposed to work. AWFUL several days before they decided to remove it. That’s the every day “stuff” that happens while you’re sweating the “big” stuff.
But, a week and a half later….and most of the aching is gone…..and thank goodness the awful pain was over after the tooth was gone. There was a lot of talking between the endodontist, the surgeon and my GP about possible bleeding problems due to my low platelet count……but fortunately, my GP gave the go ahead. I don’t know how I would have made it through another night though otherwise.Thanks again….and I will keep you in mind between now and January……hoping the chemo does its thing and gets you to the point that those tumors can be ablated. It really is amazing technology.
Julie
Annabel,
I don’t have anything to really add to already good advice you have gotten….but want you to know that I am rooting for you and your dad.
Brigitte, Thank you for your response. Yes, it does help to hear stories like your husband’s. I have to remind myself that there are always “outliers”…..ie. people who are at the far end of the bell curve….those who do not respond by being the worst case scenario. I am somewhat there as a bile duct cancer patient…..as a sort of “outlier”.
Yes, cancer is a lonely way of life. I can only imagine what is going through the minds of some of my friends and family……..a kind of “cancer fatigue” and now this on top. My family is fairly small…..immediate family is my husband, one son and his wife and two little boys, but they are close to us and when I got the MDS diagnosis my son came over immediately to spend time with me…to listen….and then…to regale me with stories about the little boys, which always lifts my attitude.
Tonight….as crappy and tired as I feel with the recently pulled molar (still taking pain meds) and worried about the MDS diagnosis and what the final type will be………I pushed myself to make a chicken fried steak dinner and invite our son and little boys over for dinner. (His wife just left for a trip to Chicago through Sunday). On one hand…..he got a good dinner and help with the little boys (5 and 18 mo) and I got to have them around to take my mind off the medical stuff for a while.
They left….I cried a little….but doing better again.
I so appreciate your post…..thank you for taking the time. It means more than you could know.
Julie
Matt….the chart is very, very interesting…..seeing this as a graph really brings it home. Keep making that flat line stretch out. This makes me so thrilled for you. You are definitely a lucky/unlucky guy……and for now….please keep it that way. Love seeing this.
Julie
bgmat48
From what I can gather…..the Gem-Cis is not on the list of chemo that are known to cause this disease. I probably fall into a group of people which just get the disease for no apparent reason….other than living.
I have an appt for Nov 30th at Mayo to meet with an expert in this disease, but if the cytogenetic tests show that this is at an acute and serious stage, then they will open up an emergency appt slot to get me in sooner. However, I found out today that the cytogenetic tests will take a week or more longer for results.
So, I have contacted my GP to see if she would agree to test my counts once a week until I get to a Mayo appt ….just to be sure that things haven’t dropped significan’t more.
I’m having a tough time dealing emotionally with all of this right now.
Julie
