spokanemom
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Thank you Mary & Tilly for the feedback! Good point about the new patient requirements. MDA will not even schedule a visit until his treatment has “completed” even though he is on continuous chemo. They also will require all scans to be repeated at their facility. UCSF will schedule an appointment after they review his medical records and they do not require scans to be repeated. The folks at UCSF have been very friendly and informative. They mentioned Dr. Kelley specifically and said that Patrick would definitely be scheduled to see her due to his diagnosis.
Patrick is still on Gem/Cis and has not gotten a scan in 2 months. After his first dose he needed 3 weeks to get his blood work back up to par, so they changed his schedule from 2 weeks on/1 week off to every other week. That means it has taken longer to get 6 infusions in. His 5th infusion is scheduled for this Friday. The chemo has been hitting him a lot harder this time around. He previously had never had chemo delayed. He also continues to get infections (indicated by fevers), which can be a bad sign that the tumors are not shrinking enough to let the bile flow. He has antibiotics that he starts every time he gets a fever, and he feels better in about 36 hours. It is unfortunate that he can go from feeling good to being so sick he needs to be in bed within 1 hour. He hasn’t gone longer than 10 days off the antibiotic. Ugh!
The Foundation One report identified 4 genomic alterations and 2 additional findings. None of them had any FDA-approved therapies for clinical trials. The doctors here, at Seattle Cancer Care Alliance, and UW Medical Center all concur that PARP inhibitors would be the next step if this chemo is not working, since Patrick has a BRCA variant. Everyone also concurs that further surgery and radiation therapies are not an option now or in the future (he already had a big resection on 12/1/16).
His oncologist is moving from the area at the end of the month. We might choose to switch to a breast cancer oncologist since they would have more experience with PARP inhibitors.
Our plan is to wait for the scan results. If it shows the chemo is not working, we plan to go to MD Anderson in Houston or UCSF. It would take us 2.5 hours to get to UCSF (with a direct flight) and 6 hours to get to Houston (no direct flights) from Spokane. Both places have potential clinical trials with PARP inhibitors, but UCSF has 2 docs on the Foundation’s Medical Advisory Board and MDA only has 1 doc. Any input on that??? I’ll post again when we get the scan results.
Hello and welcome! Your husband’s case sounds very similar to my husband’s. The timeline is even the same except off by 1 year. My husband was diagnosed in Nov.2016 at age 42 with a Klatskin tumor and had the same surgery you described on Dec.1, 2016. He did not get clear margins during surgery. Did your husband have clear margins? He also did gem/cis followed by radiation with 5FU chemo that ended in Aug. 2017. His recurrence was diagnosed last month and he is back on gem/cis. The clinical trials your husband has participated in sound interesting. We live in Spokane, WA, where there are no trials. There are 2 in Seattle, but he does not have the right genetic mutations for those. We’ll see how he responds to the chemo next month. It is so hard to wait!!
I also like reading the survivor stories here and on Facebook. I get such good info. I totally agree with you about how painful it is to watch someone you love go through this. My husband has said he thinks it is harder on me than him! We have a 15 year old son and a 12 year old daughter, and keeping up with their busy lives helps drag us back into “normal” life rather than “cancer” life. My husband is a professor and had to take leave in Spring 2017 and again a small leave right now. Is your husband still working?
Again, welcome. You are not alone.
Victoria
Such great news Molly!! Thank you so much for sharing and lifting my spirits. You have such a positive attitude. I wish you a smooth and speedy recovery from this most recent procedure.
Victoria
It’s back. An MRI from late March showed 2 slightly enlarged lymph nodes that the radiologist labeled stable, but which concerned Patrick’s radiation oncologist enough to order a PET CT. The PET CT was clear everywhere except inside the liver, and another MRI less than 6 weeks after the first showed “The mass encases the intrahepatic portal veins and bile ducts…” with 3 listed lesions of 5cm, 3.1cm and 2.4 cm. A needle biopsy was conducted on 5/9 to confirm cancer and to get samples for Foundation One. Results should be back by the end of the month, but he started back on gemzar/cisplatin today. We are going to Seattle Cancer Care Alliance for a second opinion on Wednesday, but since he started chemo today MD Anderson said they will not see him until he needs his next set of scans at the end of July. I am frustrated with the wait since he feels so good right now and it would be easier to travel from Spokane to Houston when he feels good, not worn down by the chemo!
He was originally diagnosed in Nov. 2016. He had his common bile duct, gallbladder and 2/3 of his liver removed on 12/1/16, but without getting clear margins. Six rounds of gemzar/cisplatin followed by 5 weeks of radiation with 5FU chemo that ended in August 2017.
His oncologist is moving in July, which worries us. We were devastated when we got the 2nd MRI results, but we feel better now. I love reading the stories of people who have had recurrences and are still here to tell the tale! Thank you everyone for sharing.
Hello Catherine,
I hope that your mother is doing well and that her treatment is proceeding smoothly. Could you possibly share what symptoms (if any) she experienced before her recurrence was diagnosed?
Thank you,
Victoria
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
Hello Brent,
I am so sorry to hear that your family is going through this. We also have Kaiser Permanente, but we live in Spokane, WA. I feel that they have been really great so far! The only thing we asked for that was denied was a second opinion at MD Anderson. When the renewal window came up, we changed plans to one that includes MD Anderson, just in case my husband has a relapse (he is NED now and was diagnosed 16 months ago at age 42). The oncologist was surprised that KP approved testing by Foundation One (which was not successfully completed anyway). I am sure it all varies according to the specifics of your plan though. My husband was also hoping to be stage 1 at surgery, but was stage 3B because they did not get clear margins and 1 local lymph node was positive. He is doing great and back to riding his bike to work a few days a week. After surgery, my husband did 7 rounds of gemzar/cisplatin followed by 5 weeks of ration with 5FU chemo (intravenous Xeloda). Are they planning on any gemzar/cisplatin for your wife?
Victoria
More clear scans to report! Both his MRI and chest CT were clear and they have scheduled him to have his port removed. He has had it in for almost a year and will not be sad to see it go. He is doing so well, although he physically is not back to where he was before surgery and treatment. Dec. 1 was the 1-year anniversary of his surgery, but Dec.30 was the 1-year anniversary of his hospital discharge (multiple infections kept him in the hospital for 30 days). He finished chemo at the end of June and finished radiation at the end of August. Neuropathy in his feet continues to be his biggest irritant, although he still has a bit of a rash on his hands.
He has just started weaning off of Reglan (metoclopramide) (on it since the surgery), and will be weaned off Protonix (pantoprazole) after that. He will remain on the vitamin B complex and baby aspirin (he developed blood clots in the hospital and in 2014).
We are really enjoying this sense of “normal” that we have in our lives right now. He recently signed up to participate in a Livestrong program at our YMCA. He will be scheduled to have a PET CT in 3 months.
I am so sorry that your family is going through this, but I am also impressed that you have obviously geared up to battle 😉 I am glad to hear that you will be getting additional opinions, and I think you need to speak directly with an experienced surgeon. My husband was diagnosed (Nov.2016) upon discovery of a tumor just outside his gallbladder, slightly below the bifurcation. The tumor was not known to have grown outside the walls of the bile duct, although it sounds like your father’s has. Fortunately, our town has a very experienced liver/pancreas surgeon who felt that he could perform surgery. The surgeon told us that he would remove the gallbladder and common bile duct, and would test the duct just outside the pancreas and just outside the liver. If the duct by the pancreas was positive for cancer, he would perform a Whipple. If the duct by the liver was positive, he would resect up to 70% of the liver to get clear margins. He said that my husband was healthy enough to have both procedures if necessary, but only if needed and only if they could get clear margins in the liver. My husband was 42 at the time, and a bicycle commuter in otherwise great health.
However, when they opened him up for surgery, they discovered that his bifurcation was inside his liver. They removed his gallbladder, common bile duct, and the entire right lobe of his liver. They chose the right side because it appeared to be more heavily involved than the left and they were hopeful they could get clear margins. They were not able to get clear margins, so they closed him up without performing the Whipple, even though the margin by the pancreas was also positive. He had one positive local lymph node and was diagnosed stage 3B. Prior to surgery, they were hopeful that it was stage 1, but said it was very rare for that to be the case. His surgery lasted 16 hours, in part because of all the testing needed to determine if they could get clear margins or not.
My husband completed 7 rounds of chemo and 5 weeks of radiation with chemo and has been NED (No Evidence of Disease) in all scans and blood work since surgery. He completed all treatments at the end of August. Even though we were so disappointed they were not able to get clear margins during surgery, we are still thankful they proceeded with the resection.
Your father’s health will serve him well in this upcoming journey. He lucky to have you helping him with research. I was the main researcher for my husband, and I enlisted two family-members to assist me. It sounds like your girlfriend is a great resource for you. Use this board and search for cases that are similar to your father’s. I learned so much, which helped me ask the right questions.
You mentioned liver transplantation. Did you research the Mayo Clinic Protocol? I am not sure of the equivalent in Canada.
I wish you and your family well!
That is such good news! It IS an odd feeling to move from active treatment to the watch and wait portion of things, but in a very good way. This is perfect timing too, just before the holidays. I wish you both peace in the upcoming months. Keep us posted.
Victoria
Welcome! I am sorry it has taken me so long to reply and I hope your husband’s bilirubin has come down and he was able to continue chemo. I know this experience is really like a roller coaster, with so many ups and downs. Here is a link to a thread about my husband https://cholangiocarcinoma.org/db/topic/my-42-year-old-husband/. You might take a look at the post I made on May 18, 2017, for detailed info about his experience with chemo. I am so thankful for this board, as it has been a tremendous source of information. You can use the search feature to find information about a particular topic.
I saw this post that was just put in the Chemotherapy & More forum:
https://cholangiocarcinoma.org/db/topic/adjuvant-therapy-after-resection-of-extrahepatic-bile-ducts/
