mattreidy
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I’m happy to have met my second fellow CCA survivor, in addition to myself.
Julie T. (Iowagirl) and I had a chance to meet while we were both at Mayo Clinic this week.
It was great to finally put a face with a name and meet in person to share stories and give each other encouragement!
Hi all,
I’ve been remiss in not posting for a while… I apologize for that.
I decided to go with the IMRT radiation vs Proton Beam for various reasons.
I started IMRT along with daily chemo (oral Capecitabine aka Xeloda aka 5-FU) at the Mayo Clinic in Rochester back on 6/9/15. The plan is for me to complete 28 doses of radiation which should put me out to mid July before being all done. I was very direct with my radiation oncologist and asked her to confirm that this was a curative plan, not palliative. She assured me that it is. In fact, there’s nothing to be seen on scans nor any symptoms to be treating, so it’s definitely not palliative, she said to me.
I struggled with nausea the first week until I got down a routine of taking the right antiemetics that work for me. It’s better now. I do find that I’m ready for a daily nap mid-day and my appetite is lacking.
I’m staying at the American Cancer Society’s Hope Lodge here in Rochester and it’s an easy 2 block walk to where I receive treatment, at least in June and July!
Most of the people here at the Hope Lodge are “in” for prostate cancer treatment. When I explain what I have and have done/am doing they all seem a bit shocked. Don’t get me wrong, there are some here with brain tumors and other things even worse than CCA, but nobody here has heard of it before either, sadly.
I drove the 1,200+ miles from Richmond, VA to Rochester, MN so that I’d have a car since I’m here for so long. I have to grocery shop and cook for myself while here so transportation is a must.
I’m growing tired of “treatment”, if you know what I mean. Quality of life the past 6 months has been lacking. First it was chemo, then surgery, now radiation plus chemo. The original gem/cis chemo worked so well on me that they are recommending that I do it again after the IMRT for “a good 5 rounds”. That would put me well into 2016… I’m NOT looking forward to that… My deepest fear is that I’m doing all this for naught and no matter what, the cancer will return, and I will have wasted 6-12 months of feeling good and enjoying life. I’m sure we all fear that to some degree.
If you at Mayo before the end of July, give me a shout!
-Matt
Hello everyone,
I’m back home, recovering from surgery on 5/7/15 at Mayo Clinic in Rochester, MN.
Once again my surgeon was David Nagorney.
The plan was to go into my abdomen laparoscopically and look around to confirm there were no signs of metastasis that may have not shown on CT/MRI imaging. If all looked good, Dr. Nagorney would reopen my peritoneal cavity, on the same incision as my resection in Jan 2014, and assess and attempt to remove any remnants of the ~1.5cm tumor that was originally spotted in an MRI scan in Jan 2015 and was gone according to imaging after 5 infusions of gem/cis.
The outcome was a mixture of news. On the bright side, there was no sign of metastasis and Dr. Nagorney was willing/able to open me up, reusing about 2/3 of the incision that was used for my resection, to look for remnants of the small tumor and remove if possible. On the not so bright side, the tumor is too close to a portal vein that feeds the portion of my bowel where my bile duct was reconnected during my original resection. The bile duct is apparently too fragile to try to reroute again without long term complications.
Surgery was on Thursday morning and I was discharged on Sunday morning. I flew home to VA the next day.
About a week into my recovery at home things were progressing nicely until one morning I took a shower and rubbed off a bit of scab on my incision and it started oozing, rather quickly, a bloody pink fluid, similar in look to what was collecting in the surgical drain post-op. I could largely stop the flow with a few layers of tissue and pressure but ended up going to the ER for the day where they did a CT scan and determined that it would be best to open the incision, drain and clean the wound, and let me proceed to pack it daily until healed. Overall, I guess that was good news. No leak in my peritoneal cavity, no infection in there either, just a localized collection of fluid and slight infection. I had similar issues with the first resection surgery when I ended up with two major wounds to pack for a few months.
The tumor remains in place while I recover from surgery and consider some options.
I’m considering IMRT (intensity modulated radiation therapy) at Mayo Clinic in MN, consulting with MD Anderson on Proton Beam Therapy, and longer-term looking at an immunotherapy clinical trial targeted at one of the mutations identified in my FoundationOne report.
I’ll be at Mayo again for IMRT related consulting, scans, and simulation work, 5/26-5/27/15 (next week).
-Matt
Welcome to the site and I’m sorry to hear about your father in law.
The abdominal fluid buildup is called ascites and I believe that it is an advanced symptom of the cancer metastasis and it’s overall impact on the body. I believe the only relief for it is drainage (peritoneocentesis), which is temporary.
Has he gotten second and/or third opinions on treatment?
I’d highly recommend it, if not. Especially from one of the leading Cholangiocarcinoma institutions like Mayo Clinic (MN), Johns Hopkins (MD), or MD Anderson (TX)…
I’m sure others will chime in to welcome and provider their experience. Good luck and keep us posted!
-Matt
dhometexas wrote:First- thank you to all your your support, guidance, and recommendations over the past months. Tomorrow, we have a visit with the surgical oncologist that removed the Klatskin tumor 2 weeks ago and would like your advice on questions to ask. So far we have:1. What are the results of the biopsy and the margins?
Ask for the “official” staging based on their findings.
2. At what point would adjuvant treatment be recommended? Chemo, radiation, hormone, biological?
Request to have a tumor sample sent to FoundationOne for genetic testing a future possible targeted therapy.
3. How long does it take the liver to regenerate?
The liver doesn’t actually “grow back” – what’s left just grows a bit and compensates for what was resected. Usually 3-6 weeks but you won’t even be aware of it (I wasn’t).
4. What are the chances of recurrence?
Good luck getting an answer to this other than “high”. I don’t think you’ll pin a provider down on this.
5. What diet should Chris be on?
Be sure it’s protein-rich during recovery.
6. What should his range of activity be?
Good question – Other than no driving or picking up heavy objects for a few weeks, I had no restrictions.
7. Should PT or OT be recommended?
Usually not necessary.
Is there anything else that we should ask?
Ask about frequency of follow-up scans and labs. Every 3-4 months for the first year is normal. Try getting MRIs vs CTs of the abdomen if you can to avoid the xrays associated with CTs.
Ask about what to look for complication-wise, such as bile or intestinal blockage from scar tissue that forms post-op. I had none of this, but many do.
Thanks
FredThank you all so very much for the thoughts, prayers, and support.
I received the BEST news I could have hoped for at Mayo today – there is NO SIGN of the 2cm tumor I had back in January. Apparently the chemo (gem/cis) was very effective in my case. The doctors at Mayo were quite surprised at how effective the gem/cis was…
My CA 19-9 dropped to 120, not “normal” but on the way there. CA 19-9 has always been a good indicator for me.
Dr. Nagorney, my surgeon at Mayo, has agreed to do surgery on May 7th to verify the scan results and if he sees any remnants of the tumor, remove it. I’m expecting a 2-3 day stay in the hospital.
I’m heading home to VA tomorrow (Fri) and will come back to MN next Wed for the surgery on Thu.
:: happy dance ::
-Matt
Todd,
Welcome – I’m sorry you’re here but glad you found us! It sounds like you’ve got a solid plan and imagine that you’ve been as impressed with Mayo in Rochester as I have been.
Have you been given an estimate on the size of your tumor?
Did they test your blood for any cancer markers such as CA 19-9? If so, what’s it looking like? If not, ask them to…
I’m in Rochester this week for testing – where are you doing your chemo? Locally in Arlington or at Mayo in Rochester?
Feel free to reach out any time – having others to talk to can be really helpful. If you’re on Facebook, feel free to “Friend” me.
-Matt Reidy
A little update for the record…
I had my 5th infusion of chemo (Gem/Cis) on Wednesday, 4/15/15, and by Friday I was feeling very poorly (no energy and lots of diarrhea). My extended family was gathering in NY for my father’s 80th birthday party so I drove from VA to NY for the weekend and felt worse and worse all weekend.
After getting home to VA Sunday night I pretty much didn’t get out of bed for 48 hours. I tried to stay hydrated but wasn’t eating much at all.
Infusion #6 was scheduled yesterday, Wednesday, 4/22/15. I went in and had labs which all came back normal even though I still wasn’t feeling well at all. I decided that 5 infusions was enough. Either it’s helped by now or it’s not going to.
My goal with chemo was two-fold; 1) “check the box” for attempting the “standard of care” so that I can join clinical trials that require that and 2) prove that I can keep the one small tumor I have in my peritoneal cavity at bay with no further metastasis so that my surgeon is willing to operate and remove it.
I’ve been doing the chemo locally in VA and will be heading back to the Mayo Clinic next week (week of 4/27/15) to have a chest CT and abdominal MRI to see if the chemo has prevented any further metastasis. If that’s the case, I will also be meeting with my surgeon to discuss the possibility of operating to remove the tumor. It’s near the head/neck of my pancreas and there is a possibility that a Whipple might be required. I sure hope not…
-Matt
Hi 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.
That’s fantastic Andy – It sounds like you really know your way around. What trial was your wife considering?
Andy12 wrote:Sure Matt. I find the best way to make decisions is by talking to people who have already gone down that road. I’m pretty active in that I reach out to people via a combination of emails, phone calls, and Facebook. For example, my wife is considering joining a particular clinical trial and we had some questions about how it works. I scoured Facebook to find people talking about the trial then instantly messaged them. Within a few minutes I was on the phone with another CC patient who spent an hour with me on the phone telling me about his experience with this particular trial. My wife and I are now armed with more information to base our decision. All this was done in a matter of a few minutes because I’m willing to reach out and make phone calls. Not everyone is comfortable doing that. Perhaps I could help people do those kinds of things.Welcome Andy! I’d be interested to know more about your wife’s journey and the type of information you’ve found to be most useful so that others with similar journeys can benefit. Would you mind sharing?
Hi Julie,
I’ve attached some history of my labs for you to compare to – not sure if it’ll help you but here you go.
Note that the severe changes in my results were around the time of my resection/surgery in Jan 2014.
-Matt
Creatinine
Hemoglobin
Likewise 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
