rick-kamp
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Erin,
I’m sending up prayers for your father and your family today, that the cancer was contained in the bile ducts and surgery is successful. If they are planning a roux-en-Y surgery then it sounds like the Dr’s believe it is an early cancer and hopefully the surgeons don’t have to resect much of the liver along with it.
I met a guy and his wife at Mayo Clinic who had this surgery years ago for his CCA and it resulted in a total cure for him. I don’t think he even needed to have chemo or radiation. Hopefully this will be the case for your dad.
Please keep us updated!
Rick
What do the imaging studies say about blockage in the bile duct? If the stents are not resolving the blockage in the bile ducts then the bilirubin will not come down until there is good drainage. I would think that new stent placement, or even a surgical bypass of the blockage, would be a possibility – but they probably want to get the infection under control first.
Please keep us up to date. You will be in our prayers.
Rick
Well, I got the comparison results back from the scan at Mayo and it definately shows shrinkage/reduction in tumor and improvement in the dilation of the bile duct so I’m going to take it as good news. I know some of you were skeptical but I think about one of the best things I can hold onto at this point is some hope so I appreciate the positive comments.
With a young family and 2 very young children I need to hang onto some hope so I’m glad that the comparison has shown that there has been response to the Gem/Oxali regimine and will pray that I continue to respond. I need to be around as long as possible for my family!
Rick
One other thing Ashley,
Have you checked out the Gift of Life house yet? It’s a great place to stay post surgery and you can even stay there right before transplant. It’s a great place and it might even save you a few $’s because it’s only $25 per night. I loved that place!
Rick
Ashley,
I continue to be very happy for how things have turned out for your family. Your Mom is in the best place and I’m thankful that she has made it through the protocol so far. If you remember, I was doing the protocol at the same time, but unfortunately was found to have peritoneal mets during a laparascopy procedure.
I hope that everything goes off without a hitch for your mom and your brother. Best of luck to everyone!
Rick
Thank you all for the feedback and for the encouragement. Today’s been a tough day. One of the guys that was going through the Mayo Protocol with me and whom I had the pleasure of getting to know quite well during those weeks and months got his call for the transplant last week and is finally cured of his PSC and likely the cancer. I just got an email from him today and I’m so happy for him – but at the same time upset that I can’t be on the same path and be around for many more years to care for and live with my wonderful family. It was a real tear jerker for me to get that email today. I’m so happy for my friend and his family and so heartbroken for mine.
I did have the forsight to ask my oncologist for some adavan last week to help cope with some of these bad times – but that’s not really working so well today! I guess I’ll keep fighting and see what happens.
Rick
Well, I guess it’s about time I wrap up this post with the final diagnosis information. In the middle of September, during my transplant evaluation for the Mayo Clinic protocol, we discovered what we had hoped we would not – metastasis. Everything was going SO WELL with the protocol and all of the physicians on that team believed I would be a good candidate for the potentially curative protocol, so we were absolutely devastated. After 3 MRCP’s, 3 ERCP’s, 2 Ultrasounds, a bone scan, an endoscopic ultrasound and a whole bunch of other misc. tests it all came down to a CT scan that showed the “lumps and bumps” in my peritoneal cavity. This was a shock since the radiologists believed the MRCP’s would have been more accurate at detecting them and those showed up as clear. I had a laparoscopy done the next day to confirm the findings on the CT scan which revealed extensive peritoneal and ommentum mets. I spent a few more days at Mayo to recover from that procedure and then to have a final ERCP with a metallic stent placement (it is my understanding that these are permananet and need only to be dilated every 6 months or so). I was sent home to pursue a regimine of gemzar and oxaliplatin for pallative/life extending therapy.
I’m currently 7 weeks into chemo and I definately feel rotten while recovering from it and feel much better when I have an off week. I’m currently awaiting results of some tumor marker tests and at the end of November I’ll probably have another scan to determine if we will continue chemo or not. It’s a hard decision to go forward with the chemo and take away some quality of life if it doesn’t give me back some quality and quantity.
Meanwhile, my wife had our 2nd child (a baby boy!) 4 weeks ago and we’re trying to patch things together at home. I’ve gone on disability leave for SSDI and must wait 6 months before anything starts coming in from that. Thankfully, my wife can still work part time and bring in some income, but it is a big burden on her to work and also care for the entire family. This is just a crummy situation all the way around. Due to my prior illness (primary sclerosing cholangitis), I was never able to get life insurance, either – so I don’t have much that I can leave for my family after I pass.
I guess I’m feeling a little bit blue today and wishing that there was a “way out” of this situation. I’d like nothing better than to grow old with my wife, to love her and provide for her, and help to raise our family. Instead, I’m sickly and at times am a burden. It’s embarrassing to admit how I feel today because my Christian faith tells me to trust and obey – and to know that we will be provided for. Forgive me for my shortcomings today!
The point of this post was just to wrap up the thread and let anyone who was looking for info on the Mayo Protocol to know how things turned out for me. My case isn’t typical – the majority of people who are admitted to the transplant protocol will be able to complete the protocol and for those who do there are excellent long term survivals. But, in the hope that the protocol offers, keep it in the back of your mind that it doesn’t ALWAYS work out. This cancer is so difficult to find sometimes that it doesn’t work out the way that everyone wants it to.
God bless all of you who are battling this disease. For those of you with mets (anyone with peritoneal/ommentum?), do you have anything you can share on prognosis? None of my physicians really seem to want to give me a timeframe.
Rick
Update: I was approved for SSDI but told that I must wait 6 months before I start getting paid. I asked the clerk about that and stated that I was under the impression for this illness that there was no waiting period and she responded that the only illness without a waiting period was A.L.S.
Can any of you share your experience? Was there a waiting period? If not, do you know how you managed to avoid the waiting period and what the policy that was used was?
This is a bit of a bummer for me. I was hoping that this was immediate (after all I am NOT working!). Any help would be appreciated.
Rick
I just got the call that I was approved! They just need to get some information to get my daughter added which will pay a little bit more for disability benefit. Thank God that this did come through fairly quickly!
Rick
Jill,
The publication (cited below) states that for up to 9 months you can go back to work and still collect benefits. After those 9 months, it would be determine based on your earnings whether you continue to get some, all, or none of your beneifts. In 2009, you can earn up to $980 per month for up to 36 months and keep your full SSDI benefits. At least, this is how I read it!
If I am able to work a few days a month and earn maybe $500 per month then I very happy with that!
http://www.ssa.gov/pubs/10095.html
Hope this helps. And I hope that mine gets approved soon!
Rick
I also applied for SSDI a few weeks ago. I haven’t heard anything yet but keeping my fingers crossed. Had about 2 months of vacation pay to take, hope that doesn’t slow it down. It’s also complicated because I’m a shareholder employee of a corporation. I haven’t worked in about a month and only very lightly before that. I hope that being an officer in the company doesn’t make SSDI approval impossible. The way I see it now, my investment in the company is just like owning any other stock – an investment only and not emlployment. Anyone have experience with this?
I also see that you CAN work a little after approved for SSDI – up to $980 per month. That would be great to be able to go back a day a week or so and help out when chemo is done or feeling better. Anyone have experience with that – and did it cause any problems with your SSDI?
We really need this money to come in since I am not working. Keeping my fingers crossed..
Rick
Wow Kris, I guess you are right. That is a testament to imaging not finding everything if they can’t find a tumor that is grapefruit sized (I assume this was intrahepatic?). Thank you for sharing your story.
Hopefully the imaging will be a correct representation in my case since my only chance at a longer term survival is the protocol since I also have PSC and resection is not a good option in PSC. I go back to Mayo on Sept 8 to complete the transplant evaluation and then begin treatments. It looks like the protocol is 3 weeks of radiation, followed by brachytherapy, and then chemo 2 of 3 weeks until transplant. I hope I’ll still qualify for this – even though it sounds like a tough recovery after all of that.
Thank you all for being willing to share your journeys.
Rick
Thank you everyone for the replies so far. And thank you Raye for sharing your story and info through e-mail – I will probably be getting in touch with you sometime soon. Here is what I have done and what I know so far:
The FISH staining from the 1st ERCP came back negative, so they brought me back for another few days at Mayo and did a 2nd ERCP. This time, they found cancer with the FISH staining at the bifurcation (Klatskin) – and they also saw a slight changing in narrowing versus the ERCP 2 weeks prior. They also believe that the blockage in my cystic duct is benign and a result of either my PSC or related benign blockage.
Based on this information, they believe that I am a candidate for the Mayo Protocol with radiation/chemo/transplant. So, I will be returning on Sept 8 for full transplant evaluation and if that goes ok (praying hard!), then the following week I start 3 weeks radiation followed by 24 hour brachytherapy and then chemo every 2 of 3 weeks until transplant. There are lots of hurdles left though: Insurance approval (this is a relatively new protocol and I’ve heard stories about insurance denials), verification that there is no mets by staging laparoscopy, passing the transplant evaluation (I’m not as concerned about this), finding a live donor (if I wait for deceased, it could be too late), and then surviving the transplant.
I am not managing as well as I would like, although I am putting up a strong front for my family. I have a fair amount of RUQ pain, probably from the occluded cystic duct, and some back pain as well – this concerns me that maybe the CCA is more involved than we realize, and I have a fair amount of fatigue as well but this is possible from my primary sclerosing cholangitis.
I desperately want to believe that the Mayo protocol will work for me and that I won’t be excluded, but I know that I have to remain patient for awhile yet. This might be the hardest part.Anyways, that is the update on me. I’m sure I will be around much more now that all of the testing and consultations at Mayo are done for the next 1.5 weeks. Thank you all for your comments. If you are interested, I have setup a caringbridge website at: http://www.caringbridge.com/visit/rickkamp which I am using to chronicle my journey.
Rick Kamp
Nathalie,
Forgot to ask this: Do you also have Primary Sclerosing Cholangitis? This can cause a lot of the dilation that you mentioned in your imaging reports and is a major risk factor for CCA. It is important to know if you have this liver disease in the setting of your treatment for CCA. I’m sure that the folks at Mayo will do a full work up on you for this. I’m very interested to hear who your Dr’s are there – I’ve seen many of them for my J-pouch and now for the liver issues. They’re all fantastic!
Rick
Nathalie,
Do you know who you are meeting with at Mayo? I just left there yesterday after consults with Dr. Lindor and Dr. Gores and I also have a mass in the cystic duct. All of my testing was done during the week: MRCP, ERCP, Endoscopic Ultrasound with biopsies, and full abdominal ultrasound. They’re waiting for the FISH staining from ERCP and will be calling me with a course of action next week. I’ll probably be heading back around Wednesday. Maybe I’ll run into you or Jamie D.
I don’t have any experience to share with you about the cystic duct involvement, but as soon as I do I will post it because it sounds like we are in a similar boat. I am hoping for transplant protocol – but not sure if that will work for this tumor location……
Best of luck to you tomorrow. You’re in a fantastic place! Oh – and also to forewarn you – there is a lot of construction on I-90/94. I live in Michigan so I take the same route you would driving and just encountered that construction. It might slow you down an hour or so total.
Rick
