October 5, 2017 at 3:19 pm #95759
Today we got the results of his Chest, Abdomen and Pelvic CT taken on Tuesday and he is still NED!!! Yea!!! He is doing really well and his next scan will be an MRI in January.
The symptom that bothers him the most is neuropathy in his feet and on his finger tips. That has gotten worse since treatment ended, and his doc said that was common. It might actually continue to worsen for a few months before (hopefully!!) slowly getting better over 2 years. Patrick feels like his energy is slowly coming back and he is really happy to be back on campus (he’s a professor).
It felt weird to have 3 medical appointments this week after not having any for a month. A nice weird though 😉August 28, 2017 at 6:02 am #93323debnorcalModerator
I am happy to hear that your husband is doing so well.
DebbieAugust 27, 2017 at 2:00 pm #93322mbachiniModerator
Outstanding news!! Hoping Patrick feels better soon and can continue the celebration! Much to be celebrated…….I understand your feeling of wanting to hear the words in remission. I have always wanted to hear No Evidence of Disease, in almost eight years of this diagnosis, I have never reached the NED label. BUT, I am doing amazingly well, and I know that is all that matters!
MelindaAugust 27, 2017 at 12:39 pm #93321middlesister1Moderator
Congratulations to your husband and family on such a tremendous milestone. When Mom was first diagnosed, her ONC said that CC never went into remission. However, after we got to the NED point for a few scans, her IR doc did use the term. I agree that most people understand what it means to be in remission, so we were using it to describe Mom’s situation before the doctors voiced it. However, I think NED is a spectacular label too To me, No Evidence of Disease sounded more positive than remission, but maybe because it was not something we ever thought we’d hear ( Mom didn’t have surgery).
In general, I think many doctors are leaning so far on trying to prepare us for the worst, that they forget to convey where there should be hope too.
I hope from here on out he bounces back quickly and life can get back on track.
I am so happy for you!!!!!
CatherineAugust 27, 2017 at 6:41 am #93320
Four days ago, my husband finished his scheduled 5 weeks of IMRT with 5FU Mon-Fri (I thought it was 6 weeks, but 1 week was just planning). His PET CT from before he started radiation still showed NED, and all inflammation from the PET CT in February was gone. The docs were correct when they warned us this last part would be the toughest on Patrick. He has been extremely fatigued and nauseous since the third week of radiation. He lost 8 pounds in 10 days. He goes in twice a week for IV anti-nausea meds and fluids. They will check him for 2 weeks to see if those need to continue. He starts back to work full time in 2 weeks as well.
I was initially upset that his oncologist would not say he is in remission. I looked up the definition, and it seems that if you are NED with no further treatments planned, then you are in remission. I know it is just a label, but I WANT THAT LABEL!!! I tell everyone that he is in remission because it is a word they understand. They will not take his port out until he has had 2 clear scans, which makes sense. The first scan will be at the end of Sept and the second will be at the end of November if the Sept scan is clear. The chemo nurses told me that his doc is really conservative with the good labels, but I think hope is good!!! Telling us he is in remission doesn’t make us ignorant of the statistics regarding recurrence, but it allows us to celebrate this awesome milestone.
We are celebrating as much as we can while Patrick is feeling so horrible. The kids and I surprised him by decorating the car while he was in his last radiation. We wrote “We Beat Cancer” on the back and “Way to go Dad” and “Awesome Job!” on the side windows. Then, we stopped at Dairy Queen on the way home and (surprise!!) it was filled with our friends. I had warned them that I might have to cancel at the last minute if he was not up for stopping, but he said he could eat an ice cream cone. He ended up eating lunch there! The final surprise was a “He Did It!” banner that we hung on the front porch when he got home. We are sooooo happy, but we are anxious for him to feel better. We feel so blessed to reach this milestone in our journey!
VictoriaJuly 7, 2017 at 6:49 pm #93319marionsModerator
SpokaneMom….wow….so happy to hear that your husband is feeling so well and has regained his pre-surgery weight. It just goes to show how each patient can present with different side effects, which in turn demand a different approach. In your husband’s case adding the additional fluids solved the nausea issue, which in turn allowed him to eat more. Wonderful results.
Also, I applaud you for making a decision you feel comfortable with and have a great team of physicians behind you.
MarionJuly 6, 2017 at 10:29 pm #93318sfbaybreezeParticipant
Very happy to hear your good news! My husband will be finishing chemo in August and starting radiation (plus Xeloda) in September. I’m nervous about all of this but your story gives me hope. Wishing for more good news for you and your family!July 6, 2017 at 11:41 am #93317darlaParticipant
Keep that good news coming Victoria. Glad to hear that Patrick is doing so well. Sounds like you two have made the right decision. Wishing you the best in the future.
DarlaJuly 6, 2017 at 6:03 am #93316
More great news! His MRI from a couple weeks ago was also clear. In fact, it looked even better than the MRI from April, with no intrahepatic dilation at all. He is still NED. He finished his 7th round of gemzar/cisplatin on Thursday and is scheduled to start 6 weeks of IMRT radiation and 5FU chemo on July 17th. His doc said that this is like a climb up Mt. Everest, we are almost done, but this last part is the hardest.
He handled the gem/cis pretty well, especially after they started giving him additional IV anti-nausea meds and fluids on the 4th day after each infusion starting on the 5th round. That really helped keep the nausea away and his appetite up. He is back to his pre-surgery weight.
We have had a number of people ask why we are continuing with radiation if he is NED. Four different doctors (in addition to the hospital’s liver board) all recommended we do chemo AND radiation if he could tolerate it, so this has been the plan ever since he came out of surgery without clear margins and one positive regional lymph node. It actually is a tough call, because he feels so good now and it is tempting to just get on with our lives and enjoy the rest of summer without being hooked up to a chemo pump and popping in for radiation Mon-Fri for 6 weeks. We feel comfortable with this decision for us though. He will finish radiation 1 week before he has to go back to work full-time. He is a professor.May 18, 2017 at 3:37 am #93315marionsModerator
spokanemom….great recap…thanks so much. I am impressed with the physicians’s approach to Patrick’s nausea. Can’t recall a similar posting on this subject with such great results. If only the bone pain would disappear….don’t know of any remedies and can’t remember anyone posting on this horrible side effect.
Hopefully someone will read this and share his/her thoughts with us.
Keep the good news coming.
MarionMay 18, 2017 at 3:14 am #93314
Just 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.April 28, 2017 at 2:26 am #93313momof3Participant
Congrats on this AWESOME news!!April 27, 2017 at 5:39 pm #93312gavinModerator
Brilliant news, thanks loads for sharing! Looking forward as well to hopefully hearing much more good news from you as well.
GavinApril 27, 2017 at 7:57 am #93310lainyMember
Dear Spokanemom, FANTASTIC news. Looking for more good news in posts to come. News like this makes the whole family HAPPY!April 26, 2017 at 4:44 pm #93311positivityParticipant
Great news! I hope continued progress.
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