Hello, from Connecticut
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Hi, Daisy. So good to see you and thanks for the information. Hope everything is good in your neck of the woods. I love it when I see “old” members visit the Board,
Hello Michael,
Welcome! We are from CT too. Please get a second opinion about resection! My mom had 5 doctors say no including one at Dana Farber. Dr. Chapman at Barnes Jewish Memorial did what everyone said was not possible. You can send you scans you do not need to go in person. Nothing to loose. He is the expert at this surgery. Any questions please feel free to contact me. 860-836-2600 my name is Rosetta you can read about my moms journey under my user name Daisy
Cancer related blood clots – trousseau sign of malignancy –
https://en.wikipedia.org/wiki/Trousseau_sign_of_malignancyHi Michael and Gavin,
From one Gavin to another and his dad, welcome to the site. Sorry that you both had to find us here and sorry to hear everything that you have and are going through but glad that you’ve joined. You will both get tons of support and help here from everyone and thanks for sharing with us.
As you have realised, there is tons of info on the site here and I hope that so much of it will be of interest and use to you and you know we will help if we can. You say you are feeling good Michael and feeling good sounds real good to me! I do hope that the Y-90 worked well for you and please let us know the results of this when you get them. Please also if you can let us know what the molecular testing shows when you get them as well.
And to both of you, keep on coming back here. We are all here for you.
My best wishes to you both,
Gavin
Michael,
Welcome to our group! My mother has had Y90 twic (Fen and Nov 2014), and so far the results have been wonderful. I hope when you have your scan, the results are just as great or better.
Keep in touch and let us know.
Catherine
Michael,
I too am glad you have found this group but sorry for the reason you need to be here. Sounds like you have a good team working in your best interests. Wishing you the best in your
treatment. Stay in touch and let us know how things are progressing. This group is phenomenal. We do care and are here to help and support you in any way that we can.Hugs,
DarlaOur hematologist/oncologist, DrLattanzi of the New London Cancer Center was relentless in searching for the source of the blood clots. He made our connection with Yale New Haven and together the doctors have pushed for my cutting edge treatment.
Thank you all for the warm welcome!
@marions and @lainey thank you so much for the welcome and we plan to do a lot of research from previous posts and hope for the best in terms of the opportunity for resection or surgery,We’re also exploring 2nd and 3rd opinions for treatment options from major cancer centers as recommended.
@Iowagirl we had a similar experience with a lot of guess work from our doctors about what was causing the clots but we should note that my dad also has a PFO ( hole in heart) which has complicated things a bit.Best,
Gavin (Michael’s son)Michael, Welcome to the group, though I wish you didn’t have a reason to be here.
I was one of those “lucky” people to have intrahepatic CC and a month and a half later, had a large clot form in a leg and go to both of my lungs.
From the reading I’ve done, a blood clot is often the first sign of certain cancers, in particular those of the gastro -intestinal tractr…and among those, pancreatic cancer is most likely to form clots, followed closely by CC.
My clot didn’t occur until after my resection….possibly because I had been taking aspirin twice daily in the years before the CC was found. I had a chemo port placed in my chest a day or two before the weekend and during the weekend, I had some strange symptoms of almost passing out, very low blood pressure, temperature. My oncologist at the time, went to the office on a Sunday to examine me, because I was to have my first chemo on the next Tuesday. He decided I must have an infection in my leg that needed an antibiotic (the other one) because of some discoloration (which had been there for years….but he wouldn’t listen to me). He totally missed the signs of a blood clot. He barely examined me …just stood in front of me while I was sitting in the chemo chair and said we were going ahead with the chemo. During the chemo, my legs swelled and apparently during that time, is when the clot moved to my lungs. It wasn’t until a week later when I went to my GP and related all this, that she immediately said I was going to the hospital as she was sure I had a clot.
My current oncologist told me that it is almost unusual Not to get a clot with this cancer. It has a very high rate of clot forming.
I’m sorry that the chemo didn’t work well for you…but Hope that the Y-90 blasts the CC out of the water. Ditto what others have said…..it is very good to get more than one or two opinions on the treatment of this cancer….each case is very individual…..and different cancer centers look at each case differently as well and have difficult ideas and skill sets.
Julie T.
Michael the very best RX is being positive and throwing in a sense of humor, I know it gets one far.
BTW, I want you to know that we have quite a few members who were DX at Stage IV and after various treatments (everyone is different) were able to have surgery, which is the best news we can get. Hang in, hang on and be strong.I am feeling fine! While the stroke set back my cognitive abilities a bit, I feel good. I am waiting to hear in a couple of weeks how the radioemboliziation worked. I am working every day ( real estate) which keeps my mind off my condition. I am positive!
Dear Michael and son Gavin, welcome to our remarkable family and the best place to be for CC support. It sounds like you have been dealt a double whammy! As if one is not enough! Please do not forget that we believe very heavily on 2nd and 3rd even 4th opinions. So do not be shy about it.
Read up as much as you can as knowledge is our best tool for fighting this CC. Below are some sites that you may find helpful. Please keep us updated on your progress as we truly care.http://cholangiocarcinoma.org/newly-dx/
No problem with duplication. It happens often. You can delete the other if you so choose.
Hugs,
Marionhello dear Michael and family and a warm welcome to our special group.
Your story is unlike many others in that we have reports of stroke after the diagnoses of this disease and yet with you, the strokes led to the diagnoses of this cancer.
How are you feeling now? Perhaps others will chime in in regards to chemoembolization, side effects and responses. The “Search” function allows you to read up on previous postings, but I hope for others to chime in as well,
Again, a big “hello” to you and your cheerleading team (family and friends.)
Hugs,
Marion
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