Mom of Adult CC Patient
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We have GREAT news! Son had his first PET scan after his Gemzar/Xeloda treatment. NO CANCER!! His results came back completely clear. Thank God! He has 2 weeks before he begins 5-6 weeks of radiation for preventative measures. He is feeling great and has gained a considerable amount of good weight, eating a high protein diet. I don’t really understand what they will be radiating? The surgery site to prevent reoccurrence, is what he told me. We’re on cloud nine over this news and are hopeful for the future!
Thank you all for your continued support!
Shellsbells,
No burning or blistering. That was not mentioned to me as a possibility by the radiation oncologist, so it must be a very rare side effect. I had a small bit of irritation in my esophagus plus some reflux. It was very minor and disappeared as soon as the treatment ended. No problems eating that I recall. My most annoying side effect was the hand-foot syndrome from the capecitabine, which was tolerable until the last weeks when it started hurting to walk. My treatment had no chemo breaks — I took capecitabine every day for 35 days, which did not help for the hand-foot syndrome. From what you describe, your son will have weekends off from the capecitabine, which should help keep the hand-foot fun at bay.
While each patient has his or her own unique path with this cancer, you and your son should take comfort that he is receiving expert medical care, and has such strong support from his family. After surgery and chemo, I remember how it was then hard to gear up again psychologically for radiation. I cannot say that time doing radiation went by fast, but it felt purposeful, since I knew it would lower my risk of the cancer recurring.
Regards, Mary
Wow! Great recap of events. I’m glad you’re here to share. I really am thankful for your insight. So, you didn’t experience any burning or blistering from the zapping? Any problems eating or digesting? I know every body responds differently, but your experience is helpful.
Hi Shellsbells,
The adjuvant regime your son is following is an aggressive one, so it takes a lot of patience to get through. From my own experience, as soon as the treatments stop, virtually all of the side effects clear up quickly. In my own case, just the fatigue faded away more slowly, but it did go away. For me, a lot of the fatigue was from the logistics of getting myself to and from the radiation center given I was working full-time, it was not entirely from the treatment itself.
Here is my detailed account of my own experience with radiation. I hope it is helpful.
https://cholangiocarcinoma.org/db/search/Hogwarts/
Regards, Mary
Thank you all for being supportive and welcoming! This has been a rough year for us, but we are believing that there will be healing and that we will end the year in victory. AMEN! I’m so proud of my son and his faith and strength as he faces this battle. His Gemzar infusion is behind us, thank God! He’s not tolerated the Capecitabine very well with some symptoms of hand foot syndrome. 🙁 He’s getting a break for about 4 weeks before radiation begins. He’s scared of the cancer returning and is so stressed out. It breaks my heart. I cannot begin to imagine what it’s like to have to physically fight this disease, and mentally and emotionally fight it as well.
Can you give me a heads up as to what he has ahead of him with radiation? 5 days on, 2 days off for 6 weeks. Symptoms, recovery? What can we expect and what can we do to help? Im thankful to be here and y’all are a blessing!
Thank you for sharing your story. It is difficult for all loved ones to be part of the journey. I hope he does also take control of his health, in addition to what is offered in the medical community. It sounds like he has a strong family support which is very important. Keep asking questions to your medical team and be part of his care by being informed. This is a great place for the latest research and what symptom management has been effective for other individuals. Keep us posted.
Dear Shellsbell,
I am s very sorry that your family has been faced with this disease. It seems so unfair when someone so young gets DX, but your son’s age should make the treatments more tolerable than if he was older. My mother was given a prognosis of 12 months, and that was in 2013 when they told us she was inoperable. Since then, we have been through so much and we want to have her with us for many more years. There is hope.
Hugs to you and your family,
Catherine
Welcome! Thank you for sharing your story. It was also very hard on my mom-in-law when my husband was diagnosed. I am so glad your son was able to have surgery and his recovery sounds amazing. I am also glad that he was able to get a second opinion and I hope that brings some peace of mind about the treatment options. Keep us posted!
Victoria
Hi Shellsbells,
Welcome to the discussion board. I am so sorry to hear of your son’s diagnosis that brought you here. It is great that he was able to have surgery, and with the adjuvant chemo and radiation, your son is having an aggressive treatment which hopefully will keep this cancer at bay. The regimen he is following is written up in the medical literature (search SWOG S0809 if you are interested in the studies) and showed good outcomes, including for patients at higher risk of recurrence.
I know how hard it is to watch a child, even a big one, go through a serious illness. Your wonderful support and encouragement to him, even though you cannot always be present, will help your son during this tough time. Please stay in touch and let us know how your son and your family are doing.
Take care, regards, Mary
Hello, I’m new here. I’ve been reading about all the courageous patients, their supporters and their stories since I found out my 27 year old son was diagnosed. He has a beautiful family, a lovely wife and 2 sweet children. He’s my firstborn of three. It absolutely breaks my heart that an organization like this HAS to exist. But what a blessing it is to so many! Thank you to the brave men and women who have traveled this path before us, who have shared their lives with us so we can have somewhere to turn to find knowledge and comfort.
My son went in to the ER shortly before Christmas for abdominal pain and night fevers. He had been feeling under the weather, loosing weight for no reason, thinking it was his gallbladder. They found the mass after seeing several doctors and many tests and biopsies later, he was diagnosed on New Year’s Day and had his liver resection on Jan 2. Stage 3b intrahepatic cholangiocarcinoma, 10.5cm tumor + 55% right liver resection with clear margins and microscopic invasion of one lymph node and blood vessels. His recovery from surgery went better than expected, he being a strong & healthy young man. His Liver Dr and the Liver board cited a BilCap study recommending that be his treatment. He received a second opinion and started his Gemzar/Xeloda treatment the first week in February to be followed with 4-6 weeks of radiation therapy. He has been suffering with side effects from both chemo medications and a superficial blood clot that landed him in the ER again. He is such a trooper! His wife is too! I am a mess! I live so far away and have family I’m still caring for and raising. I was with him through his surgery but it’s hard to be away now. He’s still my baby boy and I cannot imagine my life without him.
Your stories have literally given me some comfort and I have learned so much. Thank you for sharing! There are some days when I can’t look too far ahead because it’s frightening. But I have hope in God that He is in control, and holds my big boy and his future in His loving hands. Blessings to you all!
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