Blood counts dropping/Hospital/transfusions
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December 17, 2016 at 11:11 pm #93526bgmat48Spectator
How are you ? Did you start your treatment? I hope it is not too hard on you. I am thinking about you and hoping for the best. Big hugs ❤️
December 13, 2016 at 1:49 am #93498iowagirlMemberShellie,
I don’t know if there is a simple answer to your question, but I will try to answer it nonetheless.
I was diagnosed in Jan 2014 with Intrahepatic Bile Duct Cancer and had a resection a month later. In May, I began Gem/Cis with the intent to do 6 rounds as I was being pushed to do. Actually, they said 4-6 rounds, but being the person I am, ….they “said” 6 rounds, so it seemed to me that was what they wanted me to do. Chemo ended on Aug 27, 2014.
In 2015, about summertime, I made note to the oncologist that the numbers were just under normal mostly……and the response was that, “We might have damaged your bone marrow with the chemo.” But, nothing more came of that. I was told by various other professionals that this was my “new normal”.
It wasn’t until about September 1 this year that it was apparent something wasn’t right….the platelets and hemoglobin had dropped and various blood tests done for trips to the ER in September for apparently unrelated medical problems showed a continuing drop in both of them….and by the end of Oct, a huge problem was apparent with the platelets at 48K and hemoglobin having dropped 2 full poins from an already lower than normal number.
As to this being common with CC….I can’t tell you that. I think it is a pretty rare thing that can happen with any cancer that is treated with chemo that depresses the bone marrow and bloow counts.
What were your fiance’s numbers like during the chemo break? Did they go backk up into the normal range at all? Mine did ….but only occasionally.
I’m sorry that this has scared you……..but if it can happen to one of us….it can happen to more and as such, we all need to be on the watch. However, in my case, the chemo was an optional thing……the tumor had been removed and the chemo was for potentially a mop up type situation in case any cells got loose into my body. In your fiance’s case, the options are more limited…..and from what I gather, he is getting chemo as actual treatment to try to keep the cancer at bay. He has to do “something”. In my case, as an optional treatment, the risk of untreatable ICC returning was less than the risk of this terminal blood cancer. I should either never have done it at all….or stopped at 4 rounds. But, hindsight it 20-20. There is no way of knowing.
If you have any other questions, let me know….and I’ll try to answer.
December 12, 2016 at 9:29 pm #93499shelliecMemberJulie
As I am reading your posts I am afraid to look at the next line for the unknown. I can’t even begin to understand what you are going through and I am truly sorry you have to experience this! So I have a question regarding your blood cancer at what point was your hemoglobins off and realized there was something wrong? My fiance has had problems with this red and white along with hemoglobin issues and when I read your posts I started freaking out! He is currently on GEMS/Carbo due to the bad side effects of Cistplatin. But Carbo is hard on the bone marrow and blood counts he couldn’t get chemo last week due to his numbers being low. I am just wondering if this is the start or is this common with CC? He has been doing chemo again since September of this year he had a six month break with no growth. I am just wondering what to look for? Any way I hope you have a very Merry Christmas!Shellie
December 10, 2016 at 1:28 pm #93500bgmat48SpectatorJulie, your last post is an inspiration to us all. I wish you a lovely Christmas with your family and hope your treatment next month won’t be too hard. Sending you big hugs. Brigitte
December 9, 2016 at 5:41 am #93501debnorcalModeratorJulie,
You are an amazing woman. Through your example, you are showing us all how to handle adversity with dignity and wisdom.
Warmest wishes for a beautiful Christmas.
Debbie
December 9, 2016 at 1:18 am #93504darlaSpectatorJulie,
You continue to amaze me with your strength and courage. You have made a decision and I know that you will do your best to follow through. I would like to wish you and your family a wonderful holiday season. Enjoy all that it entails and especially spoiling those little ones. Have a very Merry Christmas and the best to all of you in the New Year.
Love & Hugs,
Darla(Brought tears to my eyes too.)
December 9, 2016 at 1:14 am #93503marionsModeratorOh, Julie…..love, love, love, everything about this post and….you made me cry.
Hugs
MarionDecember 8, 2016 at 7:46 pm #93509iowagirlMemberChange 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.
December 8, 2016 at 4:18 am #93502iowagirlMemberMarilyn, 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.
December 7, 2016 at 6:54 pm #93505marionsModeratorJulie….I so much can relate to your dismay.
Twenty years prior to the diagnosis of cholangiocarcinoma my husband was treated for testicular cancer. It is believed that the radiation treatment focused on his abdomen caused the secondary cancer i.e. cholangiocarcinoma.
While speaking with the oncologist I mentioned the fact that the radiation was way too broad as his testicular cancer had not invaded the lymph nodes, but yet the entire abdomen was radiated. The specialist agreed with my comment and remarked that at that time, 20 years prior, the then treatment protocol included full radiation. And, yes, it was unfortunate that my husband developed cholangiocarcinom, but he had twenty disease free years.
It makes sense, but sure did not help me accept the fact that had it not been for the radiation that perhaps my husband would be alive today.Hugs,
MarionDecember 7, 2016 at 5:45 pm #93506iowagirlMemberSomething 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.
December 7, 2016 at 3:28 pm #93510darlaSpectatorJulie,
It’s no wonder your head is spinning. Try to take some deep breaths and clear your mind. If that doesn’t work. Throw something! I think seeking more opinions is a good idea and talking to the therapist too. Even in your confusion, you are still thinking and make the right choices. Keep coming here and venting, too. It does help and we are all here for you. Please keep us updated as you can.
Hugs,
DarlaDecember 7, 2016 at 8:12 am #93507iowagirlMemberThank 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
December 7, 2016 at 1:53 am #93508marionsModeratorJulie….there are no guarantees, but there always are the options of opting in our out. Already you are ahead in the CC game, no reason to believe that this other crazy, rare, disease can’t be beat as well.
Thinking of you (lot’s)
Hugs
MarionDecember 6, 2016 at 2:33 am #93511bgmat48SpectatorThinking of you Julie. xxx
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