spokanemom
Forum Replies Created
-
Posts
-
Dear Gail,
I was so glad to see the graduation photo and hear that you were able to spend time with your kids on their special day. I know that you are doing the best you can for your family and that your children are so blessed to have you as their mom. Please do what you need to do to be wherever you want to be. If that is by your husband bedside, then make that happen and worry (or don’t) about hurt feelings later. This is such a difficult phase in your lives, and I will be thinking of you all as you continue this journey.
VictoriaDear Gail,
I am so sorry you and your family are going through this. It sounds like today was really scary. I know your kids only have a week of school left. Will it be better or worse to have them home more? I imagine some of both. Do you have any family or friends that can help you in a scheduled manner, either staying with your husband or your kids? I know that you will need breaks and I bet there are people that want to help you. Keep asking questions of the nurses and doctors. Hopefully they can give you information about what to expect going forward. Know that I am thinking of you all,
VictoriaGail,
I am so glad you are having a party!! Don’t hesitate to outsource any tasks to all the friends I know want to help you and your family. I know how crazy the end of the school year gets. I have a kiddo “graduating” 8th grade this year. Enjoy the time with your family and friends.
Thinking of you,
VictoriaDear Gail,
Thank you so much for the update. This sounds like such a difficult time for you all and I hope this procedure will bring comfort. I also will be keeping you all in my thoughts and prayers. Hang in there! Are your kids out of school yet? Mine still have another week and we are super-busy with end of year activities.
VictoriaDear Gail,
I am so sorry for you and your family. It is a great idea to speak with your kids’ therapist and get ideas about how/when to share this latest news. The hardest thing for me was that I wanted to talk about the latest developments with my friends, and I knew eventually the word would get out and I needed to make sure my kids heard it from me, not one of their friends. Please keep us posted about what path you choose to take. I know there are lots of options to address your husband’s pain.
Take Care,
VictoriaDear Gail,
I am thinking of you and your family today and I pray that the PET results show the cancer has been kept at bay. It sounds like you you are being a true supporter of your husband on this extremely difficult path. I hope you have a positive meeting with the oncologists and you find a little peace in making the next decision.
VictoriaJust a quick update to recap Patrick’s treatment so far:
Dec 1, 2016 – removal of gallbladder, common bile duct, and more than 70% of his liver. 5cm tumor in the common bile duct, and “clusters” of cancer cells found up in his liver and by his pancreas. Positive margins in the liver and by his pancreas. 1 positive local lymph node. 30 days in the hospital due to multiple infections.mid-Feb 2017 – Begins 1st round chemo of gemzar/cisplatin. Two weeks on then one week off. After 3rd rounds, needs Granix shots to increase white blood cells. Those shots cause bad bone pain, but otherwise his only symptom is fatigue.
April 2017 – An MRI two months after chemo begins shows No Evidence of Disease, just like every other scan has shown, even when he had a 5cm tumor in his common bile duct.
April/May 2017 – The fourth round of chemo causes severe nausea 4 days after each chemo infusion (when the IV anti-nausea meds wear off). He needs fluids and more IV anti-nausea meds. For the 5th round of chemo, they schedule him to get fluids and IV anti-nausea meds 4 days after the chemo. That has prevented any vomiting for the 5th round. He gets 3 days of Granix shots after the first infusion and will receive Neulasta (single shot) after the second infusion. This will continue for the rest of chemo. We are still working to best address the horrible pain caused by Granix (and we assume Neulasta as well). Thank you for all the tips we have found on this site!!
The plan is to have a PET CT near the end of June to make sure he is still NED. Then chemo will continue through mid-July (5 months total) so he can begin radiation and complete 6 weeks before the end of August.
We did ask the oncologist why they choose different scans and she said she chooses MRI to get the best look inside the liver and CT or PET CT to get the best look at the entire body.
I am so sorry you are going through this, and it is truly shocking how quickly life can change. My 42 year old husband developed pancreatitis after his ERCP in November and was in the hospital for a week. It was frustrating because I wanted to focus on getting rid of the cancer and instead had to focus on recovering from the ERCP. I hope that you are able to find a great oncologist and develop a treatment plan for your husband. Do not hesitate to get 2nd or 3rd opinions.
Dear Gail,
I know the recommendation not to pursue clinical trials was not the news you were hoping to hear, and I agree with Marion that the oncologist needs to be specific about why he would not be considered for a trial. Have you met with a different oncologist ever and if so can you meet with them again? Now might be the time to seek a second/third opinion. Can you get to any of the major cancer centers listed at http://cholangiocarcinoma.org/for-patients/major-cancer-centers/ ?We are here for you, so don’t feel bad about venting. This is the place to vent! I so appreciate your willingness to share your journey. It makes me feel less alone.
Thanks,
VictoriaWe are with you! Scan anxiety is so horrible, and you are a warrior. Let off steam and treat yourself kindly and know that we are here.
Gail,
I am so sorry your husband is back in the hospital. My husband developed clots in his arms after having surgery in December, and it definitely complicated his treatment. He also randomly had a clot in his calf 2 years ago and they suspect that was actually the first indication of his cancer since, as Marion said, gastric cancers tend to throw clots.I hope that oncology develops a plan for your husband soon. Remember the positive results you had from the MRI and PET scan! You are moving in the right direction and unfortunately there are these horrible downs to go along with the ups, but I will continue to pray that you are still heading in the right direction.
Best Wishes,
VictoriaGreat news from the MRI and PET!
Children have a way of forcing us to lead as “normal” a life as possible because they are so active. I am glad that you have a support network around you and that you are open to asking for help. It helped me to have a single close friend kind of manage all the other helpers for me. I would tell her what I needed, and she would update the meal sharing website or track down someone who said they wanted to help, or organize carpooling for my kids. Sometimes I couldn’t motivate myself to do anything other than tell her what I needed, but that was all I needed to do and she took care of the rest!
Best Wishes,
VictoriaPatrick’s MRI was clear!!! We were so relieved! That means that he can continue receiving gemzar/cisplatin. He has started to get GCSF after every chemo dose, and they are trying to get insurance to approve the longer lasting version. Yesterday, he vomited for the first time since beginning chemo in February. It might have something to do with the fact that the other 3 people in our household have sky high fevers and nausea. Thankfully, his oncologist put him on antibiotics when the first kid got a fever, so Patrick has not developed a fever.
He will be scanned again near the end of June. The oncologist said that scan would be a CT or PET CT, and would be a larger field that the MRI.
His genetic testing showed that he has the same BRCA1 “variant of unknown significance” that his mother has. She had breast cancer at age 38 and 63. Two of her three siblings also had cancer, one dying at the age of 52. The news was not shocking, but good info to share with the rest of the family.
