iowagirl

Hi!

First, let me extend my deepest sympathy to you in the loss of your mother. I know what it is to have a parent die and I understand some of what you are feeling right now.

I almost didn’t read your post as I tend to try to stay away from reading “memorial posts”, because they are just too hard for me to read most of the time…without crying all day. But, something led me to open your post anyway, and I’m so glad I did.

You see, it wasn’t that long ago, that I was looking for info about people having more than one resection and came across your mom’s posts. Her story was remarkable, to say the least, and she gave me hope….and drive to push for the treatment plan I felt was the right one for me.

After a second recurrence (and two previous resections) my oncologist wanted me to do a chemo, but I KNEW that the new 1.5 cm tumor was operaable or could be ablated. I fought back and fought hard to get one of those latter approaches and finally was able to convince the doctors….or at least convince them that I was digging in my heels and refusing to do chemo. The tumor was succesfully ablated last August. But, about two months later, I was diagnosed with myeleodysplastic syndrome (MDS) due to the first chemo I had in 2014. It is basically bone marrow failure …a type of blood marrow cancer, often called pre leukemia. All my blood counts plummeted. Had I started the chemo when they wanted me to in August, my counts would have dropped , but the true cause would have been obscured andc caused even more damage to my bone marrow with the chemo sending me immediately in the full blown leukemia stage of MDS. I am not eligible for a bone marrow transplant due to the underlying (though NED) bile duct cancer, but I was able to try treatment with the only drug available for MDS at this stage and despite only having a 15% chance of remission, I did get remission after 2 and a half months of treatment, confirmed at 4 months of treatment.

So today, I will send special prayers for your mother…and for you in your loss…..and give thanks for your mom’ freely sharing her story on these boards. Right now, my. MDS is a teerminal diagnosis, but like your mom, I’m pushing for every last day and minute and hope that new treatments become available. For now, I am in complete remission from the MDS and I received clean scans in April for the CC. I owe that, in part, to your mom for freely sharing her story here.

Julie Tupker.

Thanks for posting that news. Good to read that finally something is coming from that. Now, I just would be interested in knowing if Gem /Cis given after a resection has any benefit for people like I was. I really shouldn’t look back…..what’s done is done.

Brigitte,

Congratulations on getting through the first round of the chemo-embolization. I’ve never done it myself but it’s good to hear first hand from someone who has, because you never know when it might come up.

It’s interesting that they did this through your wrist artery. Back in 2002, I had a cardiac catheritization and normally those were always done through the groin. However, my cardiologist who was just someone pulled into the ER on my consult, had been trained to use the wrist if the artery there was open enough. He left our area soon after and no one did it that ay again here for years until recently. Now, suddenly, one cardiology group is almost all trained to do it through the wrist.

When I had the cardiac catheratization done through my wrist, I did not have to lie still in bed afterward, could sit up and eat and walk around. It’s definitely the way to go if you have someone trained to use the wrist artery. Glad to hear that some are starting to use it for these other procedures.

Congratulations……have a good two weeks until your next procedure and then I hope you get to grab the brass ring and enjoy life. )))

Julie

When I was on Gem/Cis, my hemoglobin dropped to 7.0. I could barely walk 20 feet without being breathless/short of breath and felt horrible. The ER consulted with my oncologist who did order a transfusion. But, they were still hesitant with the hemoglobin at 7. For whatever reasons…low blood supplies….I don’t know….but one hospital has decided to put the threshold at 7.0. I got the transfusion and two days later, felt much better.

With the MDS that started last fall, I have gotten a number of packed red blood cell transfusions…..and again, the one hospital my clinic was associated with, still had the threshold of 7. Even at 7, they sometimes balk. However, I changed oncologists…another clinic entirely in January, and they are more closely associated with our other hospital, which has the area blood bank. They leave it up to the doctor more to decide and my new onc said that he transfuses at 8 to try to keep the hemoglobin more at 9 or 10, which is more livable/quality of life.

To show just how much divided opinion there is on this subject, my Mayo hematologist said transfuse at 7, unless very symptomatic at a higher number, because everybody is different.

To further complicate this whole subject, if someone needs a lot of transfusions then there is a question as to ferritin level in the blood and body organs from getting too many transfusions . The ferritin/iron can damage organs if the number gets too high. So, for someone who may need to get a lot of transfusions, it becomes an issue of balanacing quality of life with possible iron overload problems when looking at the question as to when to transfuse red blood cells.

Iron chelation is possible to remove some of the excess iron from the body if the ferritin level gets too high from multiple red blood cell transfusions, but, I was warned by my Mayo doc that there can be significant side effects, so he’d rather I stayed away from that. He said that regular blood tests, withdraw blood, which also lowers the ferritin level, ….which is actually a treatment method for iron overload as well…..and obviously would have significantly less side effects. I’m not getting as many blood draws now as I was a couple months ago……because I’m in remission from the blood cancer. It takes many blood draws to bring down ferritin levels, so I’m not sure what next. There has apparently been found a correlation between high ferritin levels and less survival time for MDS patients.

They generally check ferritin levels after about 10 red blood cell transfusions. I read one place that said a ferritin level at 1000 was the threshold for starting chelation therapy. They checked my ferritin level after about 8 transfusions and it was at 1400. I haven’t seen the hematologist here at home since then to discuss it, but as I said, I did talk to the Mayo doctor who really wanted me to stay away from the chelation drugs.

As for platelets, the guideline I was told at Mayo was when they get to 15K, then they transfuse. The problem with platelets though, is that they don’t last long in the body…maybe about 4 days. The body “chews” them up pretty rapidly. So, if the count goes back down again after a transfusion of platelets, you may need more frequent platelet transfusions. My platelets were down as low as 11K and they did transfuse. I also got a transfusion before getting my port put in.

Julie