My Introduction
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Tagged: Ascending Cholangitis, Cured, Hope, immunotherapy, Keytruda, NED, SIBO
- This topic has 407 replies, 40 voices, and was last updated 2 years, 3 months ago by Jjet65.
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April 12, 2015 at 11:08 am #80329middlesister1Moderator
Dear Matt,
Thank you for sharing the information about the Neulasta. I am so happy that you were able to take the family vacation. It looks beautiful. Have a wonderful time and safe travels.
Catherine
April 11, 2015 at 9:34 pm #80328lainySpectatorBuenos Diaz, Matt. Beautiful picture and great post! SO glad to hear it turned out like it did. ENJOY and thanks for the great report. Via con Dios on your return!
April 11, 2015 at 8:52 pm #80327mattreidySpectatorHi everyone,
I thought I’d document my recent experience with Neulasta for others in hopes that it might be helpful.
After my first round (2 infusions) of gem/cis chemo, I went back for the start of my second round, but my labs came back showing that my neutrophils (one type of white blood cells) we low. I think mine had dropped to about 800 and my oncologist requires them to be above 1,000 before an infusion.
I waited 5 days, went back, had labs, and the neutrophils were back up to about 1,300 so we proceeded with chemo infusion number 3.
The family and I had planned a week on the beach in Mexico for Spring break the week after finishing chemo round 2 and I was concerned that my neutrophils would bottom out while there, leaving me susceptible to getting sick.
As a result my oncologist agreed to give me a shot of Neulasta to boost the neutrophils.
I did some reading about Neulasta and got really concerned about potentially severe bone pain, an apparently common side effect. More reading suggested that taking Claritin could prevent/lessen the bone pain side effect.
I was given a shot of Neulasta in my belly the day after infusion #4 (a Tue) and took my first Claritin that same day. I continued to take the Claritin daily and had no issues thru Saturday. We were leaving for Mexico Monday morning and I was thrilled to have escaped the bone pain.
Saturday night, while laying in bed, I started feeling what I thought was kidney pain. I could feel throbbing pain with EVERY heartbeat. Tossing and turning, wondering what it was for a few hours. The throbbing pain was constant, but sometimes much worse than others. I had never felt anything like this before. It finally dawned on me that this must be the bone pain that people had warned me about. It wasn’t my kidneys, but my pelvis that was throbbing so. Surprisingly, I took some ibuprofen and the pain dissipated quickly.
I continued to take ibuprofen and Claritin on Sunday and I never had the same intensity of pain again.
I’m sitting on a lounge chair by the oceanfront pool at the house we’re renting in Mexico writing this now and am happy to say that the pain never did come back this week. I’m still taking Claritin daily until I get back home, just in case, and do feel an occasional throb in the pelvic region, but not something that prevents me from doing anything.
March 29, 2015 at 12:40 am #80326mattreidySpectatorLikewise Sherri. It was so nice to meet someone else in person going through a similar journey. I’m anxiously awaiting your feedback of the trip to MD Anderson. No matter what, you’ll know more after that and can at least formulate a plan. We will get together again! -Matt
March 28, 2015 at 9:46 am #80325gavinModeratorGreat that you 2 were able to meet up!! Hope that all goes well at MD Anderson Sherri, fingers are crossed for you!
Best wishes,
Gavin
March 27, 2015 at 11:45 pm #80324darlaSpectatorSherri and Matt,
So glad you two were able to meet and spend some time together. It’s such a good feeling to be able to talk to someone who knows and shares all you are going through. It’s comforting and helps make you both stronger knowing you are not alone.
Hugs,
DarlaMarch 27, 2015 at 8:41 pm #80323sherriMemberMatt,
Thanks for meeting with me today. You had a lot of valuable information for someone like me just starting this fight. It was a comfort to sit and talk about the emotional side an what we are fighting for and our fears.Let’s just keep the fight and hope going. I will let you know when I leave for Anderson.
Thank you
SherriMarch 26, 2015 at 1:39 am #80322mattreidySpectatorThank you all for the well wishes! Debbie, thanks for following along and best of luck to your husband. Please don’t hesitate to reach out to me if you have any questions or want to compare notes. -Matt
March 25, 2015 at 4:37 pm #80321lainySpectatorDear Debbie, so glad to hear about your husband’s successful surgery. You are so right about attitude, it is one of the most important attributes a person can have. My daughter always says that Teddy taught the 4 kids so many life lessons and attitude was probably the biggest. I am wishing for your husband’s good recuperation to continue and the very best for all of you.
March 25, 2015 at 4:12 pm #80320debnorcalModeratorHi Matt, Just want to let you know that I’m sending wishes for continued healing to you. I’ve been following your journey as you post and am praying for continued good news for you. My husband has traveled a similar journey, about a year after you. He had a successful extended resection at UCSF on January 12, 2015 and is recovering well. Your attitude is similar to his as well – stay calm and positive, face each issue as it arises and keep your eye on the prize. Through your example, you and he are both showing your families how to deal with adversity -an incredible gift for spouses and kids.
You have a beautiful and supportive family. Stay strong.
debbie
March 24, 2015 at 7:24 pm #80319gavinModeratorGreat news Matt, yay indeed and thanks for sharing that with us all! And love the pic of you and the family as well!
My best to you and your family,
Gavin
March 24, 2015 at 2:54 am #80318marionsModeratorMatt….this is what I have learned: you started with a baseline reading of the CA 19-9 – the drop accounts for tumor response to treatment.
Some people lack a specific protein and for those the CA 19-9 is non-existent. That does not appear the case with you. Congratulations on the fantastic results.
Hugs,
MarionMarch 24, 2015 at 2:26 am #80317mbachiniModeratorMatt,
I was one that never had the rise in that marker…it stayed normal even when my tumor was huge in my liver. The only time it went way up was as you described in the above article…after my immunotherapy treatment and the tumors were shrinking.
Melinda
March 24, 2015 at 1:56 am #80316mattreidySpectatorMattReidy wrote:After just one round (2 infusions) of gem/cis my CA 19-9 is down from 457 on 2/18/15 to 278 a month later on 3/18/15. Still “high” but moving in the right direction. I’ll take it… Yay!I’m waiting for labs before starting round 2 (infusion #3) right now.
I’m curious to know what other’s experience has been with chemo, gem/cis or other, and the rise/fall of CA 19-9 during treatment.
Did it go up and then down? Just down? No change? Was the rise/fall/steady level an indicator in your case of the effectiveness of the treatment?
Reading the following, I’m not sure if I should be glad or worried that my level dropped by nearly 50% in a month while on chemo.
“Most doctors find that the most important use for tumor markers is to monitor patients being treated for advanced cancer. It is much easier to measure the marker to see if the treatment is working than to repeat chest x-rays, computed tomography (CT) scans, bone scans, or other complicated tests. It is also cheaper. If the marker level in the blood goes down, that is almost always a sign that the treatment is effective. On the other hand, if it goes up, then the treatment probably should be changed. One exception is if the cancer is very sensitive to a particular chemotherapy treatment. The chemotherapy can cause many cancer cells to rapidly die and release large amounts of the marker, which will cause the level of the marker in the blood to temporarily rise.“
March 23, 2015 at 5:51 pm #80315lainySpectatorMatt, what a beautiful family! I thought you were the oldest kid in the picture! I love that we can put faces to the families!
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