rick-kamp
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Michael,
I do have cancer to the peritoneum. Mine is mostly in the area of the omentum. Originally there was a little bit of ascites, but after chemotherapy started the ascites has completely resolved. I’m happy to resort that the peritoneal cancers appears to have regressed – although there is no easy way to confirm this. Usually chemo is the best way to deal with ascites. Beyond that diuretics have been known to help and a draining/parecentisis is usually the last line of treatment.
I can’t speak to the blood clots, but wish you the best of luck with that!
Keep up the hope. I know it can be frustrating at times. There was a point that I thought I was going to pass very quickly (sometimes I still have these pitty parties) but I guess I am doing on physically.
Best of luck you to you.
Rick
Day 42:
Feel relatively normal now. Actually, I think I feel a little bit better in the RUQ area where that primary tumor is located. I made appointments for my followup afte the TS treatment. They are September 29 and 30 – so just 19 days from now I should know a lot more about the effectiveness of the treatment. My gut instinct is that the TS treatment was very effective with the primary tumor. I think that I’ll probably not need to have another treatment to keep that under control. However, I am slightly concerned about the metastases to the peritoneum. I’ve had some issues recently with nausea and dehydration – but those could be related to a number of things including the chemotherapy that I am still taking!
I did wind up in the ER again last weekend to get rehydrated and for pain contol. I still find that I have a lot of pain in my belly area which is probably from the peritoneal cancer and also some in the Lower RUQ probably from my distended and diseased gallbladder.
I am taking a new medication called Sandostatin which is an injection that I give to myself twice a day. it is supposed to help with the crazy diarrhea tha I have been having. I hope it works.
I guess that is about it for the update. I’m anxious to give you the full scoop after my Mayo appointment and scans. Please keep yoru fingers crossed and keep praying for great results!
Rick
Jenny,
It is good to hear from you. I’ve been following your CB site and glad to hear that things have been moving along for Josh. Sorry to hear about the complications – but glad they are only temporary.
The stent changes should be a piece of cake. I’ve had quite a few ERCP’s and stent changes in my time. A few times I’ve had minor cholangitis afterwards but a quick script for Cipro took care of them. I can understand your terror after Josh’s last experience but keep in mind that once the sphincter has been cut, it doesn’t need to be done again. His risk of bleeding for just a stent change is MUCH smaller and given his history they will probably take preventative measures with meds and could even do blood tests to measure clotting beforehand.
We are praying for you and hoping that chemo/radiation does its’ job and that the EUS and staging surgery come back looking good so he can move forward with a transplant. You are on a path for the very BEST possibility of a cure. I’m sure you’re aware of the rates, but we were told about 80-85% 5 year survival and very similar cure rates.
Thank you for the frequent CB updates. Please keep them coming.
Rick
Cale,
Sorry you had to find us, but very glad to hear that surgery is an option for you. That is the very best chance you have at beating this cancer is with surgery. And the Mayo Clinic is the very best place to be, IMO.
You are not alone in your age and life circumstances. This cancer does strike younger people also. There are many here who were diagnosed with this cancer in their 30’s or younger. I am 33 now and have been battling this cancer for a little more than a year now. I am also married and have 2 children. My family is the absolute best and I fight as hard as I can for them. My wife was about 5 months pregnant with our 2nd child when I was diagnosed with this cancer, so I can relate to that feeling.
The best advice that I can offer you is to have a positive attitude, learn to accept that you will have limitations as you prepare for and recover from the surgery (and any chemo or other treatments afterwards?), and accept all of the help that people offer to you.
You will be in my prayers for a very successful surgery and that you will be one of the people that beat this cancer!
Rick
We found out today that the radioembolization/Theraspheres could very much have caused the increrase in the tumor marker. Cell death plus any kind of biliary irritation can cause the numers to shoot up and I probably have contributors from both.
So – today I had a followup CA 19-9 and we will determine whee to go from here. If it has gone back down, great. If not, then we’ll watch it for a little bit longer before digging deeper into the cause.
But all things considered, I’m convinced enough that it is from the Theraspheres treatment that I’m not going to freak out about it anymore.
Rick
Dawn,
Welcome to the website. I hope that you will find some of the answers you seek and some good support along the way. So sorry to hear about your sister in law. I hope that the new chemo drugs will be effective against the cancer because that is often one of the best pain killers available – at least it was for me. When I had a combination of chemo that was effective at killing the cancer and preventing it’s growth cycle I felt a lot better from a pain perspective. Now that I have stopped responding to chemo (still trying though!) I have found my pain is also an issue. I currently use the Fentynal patch in addition to oral morphine. The patch along with an oral med for breaktrough pain is a good method because this way you get a constant release from the patch and a boost from the oral when needed. There are times that I find I let myself get behind though and don’t take the oral meds when I should and then it is a battle to get pain under control again. You also have to remember to change the patches out every 3 days on time or you will get behind on the pain as well.
As far as other ideas for the pain – my specialist at Mayo has recommended a nerve block. The source of my pain is in 2 spots. One is due to a distended gallbladder resulting from a blocked cystic duct and the other is due to peritoneal metastases. He feels that interventional radiology can sucessfully block the nerves that are causing this pain by undergoing a procedure in which they numb or kill specific nerves. I’m considering having this done on one of my next trips to Mayo. Another option for controlling pain is to get Hospice involved. That usually has a stereotype to it, but the main purpose of asking for their help would be to control the pain. They have access to and can help in ways that your oncologist or pain doctor cannot. They can get you liquid morphine which seems to work better than pill form, Actiq fast acting Fentynal in the form of a lollypop, and some other top notch methods of relieving pain. You can even get a pain pump from them to infuse IV morphine or dilaudid if things are really bad. I have looked into Hospice for pain relief and decided against it because I am still very much in fighting mode and I feel that by calling in Hospice I would be sending a message that I am giving up which I am definately not ready to do.
The other thought that I have is that sometimes emotional pain can enhance physical pain. A lot of cancer patients get depressed and this can make physical pain worse. So, if she is experiencing any anxiety or depression there are meds available to help control that and in the process maybe help with physical pain as well.
I wish the very best for your sister in law and family. Please keep us updated on how things are going.
Rick
Update:
I had bloodwork run a few weeks ago and never got called with the results, so I figured I would inquire on them today. My CA 19-9 has almost TRIPLED since it was last drawn about 4 weeks ago (slightly before my Theraspheres treatment). I have some theories, but I’m still a little bit fearful of these results.
The labs were taken about 2.5 weeks after my Theraspheres treatment and I know that this treatment takes time to work and steadily kills off the cancer for weeks after it has been done. I also know that dying cancer cells can sometimes increase the levels of tumor marker proteins in the blood. So this is one possibility that it was so high. The other reason that I can think of is that I had been off chemo for about 3 weeks at that point per the instructions to get the Theraspheres treatment. So, I guess it is possible that not being on chemo allowed some growth of cancer cells as well.
I’m not sure what to think. It’s hard to take this news because the new number is VERY high and it only took about 4 weeks to triple. But I also hope that it is actually good news because so much cancer is dying off from treatment. I wish I had a more clear picture.
Tomorrow I have a fit in appointment with my oncologist. I need to ask him about this and figure things out. The only person I was able to talk to today was a nurse and she didn’t have any insight as to why the tumor marker has jumped so much.
So – please keep your fingers crossed for me. Hopefully this rise in tumor marker is actually a good thing. I couldn’t handle bad news right now, I have so many things to look forward to doing in the next month I don’t want to deal with bad news.
If anyone has feedback on this, PLEASE let me know. If you have info about how radiation affects tumor markers, or anything that can affirm my research that dying tumor cells can cause the increase I would love to know. Tomorrow’s appointmetn seems so far away!
Rick
I have a thread started under General Discussion for my experience with radioembolitzation/Brachytherapy. While my results aren’t in yet, it might prove to be a little bit helpful for you as you gather information.
Rick
Kris,
I am glad to hear that things are slightly better after the followup appointment, but disappointed for you that there wasn’t all over good news. You have an amazing attitude about all of this and I wish I could steal some of your fighting spirit for myself!
You have been on my heart and mind since the first post on this thread but I couldn’t come up with the right words to cheer you on. It sounds like you did that for me with the results of the followup appointment.
You keep on fighting and I will keep on praying.
Rick
Thank you all for the kind comments on this thread. You’re all great!
Here is another update. Day 23 after treatment:
The Jaundice issues that I was having seem to have disappeared. At least I can’t tell in my eyes or under my tongue anymore. When I asked my local oncologist about it, he said that it is quite possible that the increase in my LFT’S and Bilirubin was a result of the theraspheres and expected if that were the case it would clear up and return to more normal levels within 3-4 weeks. That seems to be the case as I can’t see the yellowing anymore – but I haven’t seen any bloodwork results lately to verify that the count has gone down.
I started back up on chemo on day 14 after treatment and am back into that grind. Thankfully, I am only takng one drug right now – Xeloda 1800mg twice per day. That is a little bit of a lower dose than typical from what I have read and not I’m sure exactly why. I am definately feeling the effects of the chemo again and already miss the break that I had! On the other hand, I’m glad to be started back up because I know that it has helped keep the peritoneal cancer in check and the resulting ascites. I haven’t had any issues with ascites since my offical diagnosis in September 2009. After I started chemo the ascites has resolved completed. But – I am fearful that it is starting to return. That 3+ week break from chemo may not have been a good thing. My abdomen feels slightly distended and uncomfortable which makes me think I may have some fluid buildup – but my wife also reminded me that I’ve been eating quite a bit during my break from chemo and it might just be weight that I have put on. Either way, I’m not liking it very much but I certainly hope it isn’t ascites.
I made plans with my local oncologist to get a CT scan in 6 weeks to evaluate the success of the Theraspheres. We’re going to do this at a major center close to my home instead of the local hospital because I’ve had bad experiences with the scan quality and radiologist interpretation at the local hospital. We’re hoping that the regional center will give us better results. We will then send the films off to Mayo so they can review them and decide if I need a 2nd Theraspheres treatment.
Overall, I am doing pretty well. I think that the side effects of the Theraspheres are officially over and now being replaced with chemo side effects! LOL! Now we just wait to see what the results are. My pain levels have certainly not subsided, but I guess we don’t expect that right away even if that primary tumor dies off.
So – that is the latest here. I want to fast forward 6 weeks so I can wrap up this thread with the final results, but that is beyond my abilities.
As long as I don’t forget to post the final results I think it will be helpful for future users to read my experience. If anything else noteworthy happens before that scan, I’ll put in another post.My best to everyone.
Rick
Update: Day 16
I feel great today. Yesterday was an entirely different story! I was put into the hospital for the day yesterday because I had severe pain, dehydration, fever, and chills. I’m not sure exactly what caused that, but I wouldn’t be suprised if it was the beginnings of a cholangitis attack. I was pumped full of fluids (4 bags!) and antibiotics and that seemed to help tremendously.
The other thing that I found out is that my bilirubin has risen sharply since my radioembolization procedure 16 days ago. It was at 3.4 yesterday (normal range goes to 1.2) and it was within the normal ranges when I left Mayo 2 weeks ago. I really doubt that my stents have become blocked in that short of a period of time or that the tumor has advanced because of the theraspheres treatment, so my best guess is that it is a toxicity from the treatment itself. I also know that it “can” damage the bile ducts and I was at increased risk for this because of my underlying liver disease. So I guess now it is a waiting game to see if it gets any worse or if it improves. If it gets worse, I suppose I will be off to Mayo soon to have everything checked out since my local GI’s arent’ comfortable (or capable?) of managing my stents or performing the ERCPs. I’m really hoping that it will just subside and that it is just a temporary toxicity from the radiation in the theraspheres. That theory makes the most sense to me given everything else.
But as I mentioned at the top, I am feeling quite well today. There is no sign of yellowing in my eyes or skin (it seems to be intermittent anyways), my pain is mostly resolved, and I have some energy again. Ohhhhh sweet energy!
The verdict will not be in on this treatment for some time yet but I like to post about all of the little details along the way. When I have my CT scan to check on the treatment I will be able to complete this thread.
Rick
Linda,
Hang in there. I can’t imagine it isn’t easy dealing with all of this and then not feeling like you get the support you need at home. The encouraging things though is that maybe this clinical trial is exactly what you need to kick some cancer butt!
I wish you the best of luck in getting through your difficult day and all of the difficult days that may come in the future. Just a thought – but have you considered applying for disability through social security? It is almost a sure thing with the diagnosis of cholangiocarcinoma. The only drawback is that you have a 6 month waiting period and may not work during it. When I was battling heavy chemo I stopped working and applied for disability, was approved, and now get some financial assistance. I have since returned to work on a limited basis which allows me a little bit of supplemental income while I can keep my disability income as long as I don’t earn over a substantial amount. Since I really don’t work more than about 8-10 hours a week at this point it is very helpful to have the supplemental income. It is also nice because it allows me to spend more quality time with my family because I’m not so run down from work all the time. Just a thought for you.
Rick
Doug,
I am in a very similar situation to your wife. I have Primary Sclerosing Cholangitis which is VERY similar to PBC. It has damaged my liver quite a bit, but not to the point that I was on the transplant list. My cancer was detected about a year ago and it was eventually discovered that I had metastases so surgery was no longer an option for me.
I have been consulting at Mayo Clinic and 11 days ago I had a treatment called Theraspheres, which is the glass beads that you refer to. You can look at my experience under a seperate post in the “General Discussion” area. The Dr’s at Mayo were not too concerned about my liver dysfunction due to the PSC, but they did mention that it would be harder on me than on someone with a more healthy liver. I imagine this would be the case with your wife as well.
So far, the treatment hasn’t been too bad. Today was a rough day, but I am sure that I will improve soon. The literature varies and some say it takes 10 days to recover while others say it takes up to 2 weeks.
The nice thing about the treatment is that they can target all of the tumors so your wife could get local treatment for all of her tumors. But it might mean several treatments to get radiation to them all.
Best of luck to you.
Rick
UPDATE/DAY 11:
Where did that truck come from? I feel like I’ve been run over by an 18 wheeler today. The fatigue and general pain/unwellness really hit hard today. I can’t figure it out. It might have contributed that I didn’t get a good night of sleep and I think the pain meds I took made me nauseous. I just don’t know what to think – most of the literature about this procedure says that the recovery is worst a few days after treatment and generally better by day 10. It looks like I am an exception to the rule once again!
The other new things are that 1.) I notice a tinge of yellow in my eyes. Not sure if it is jaundice yet but it is looking that way. It’s possible to get toxicity from this treatment which causes the jaundice so hopefully it goes away as my liver heals. 2.) My abdomen has a full/bloated feel to it so I wonder if I am holding any fluids. If there is some toxicity to the liver this could certainly cause it – but so could the cancer and especially the mets in the peritoneum. 3.) I’m not looking forward to starting up chemo again on Thursday. But – I know it is quite necessary as I’ve been off for 3 weeks now and I need to keep those mets at bay. 4.) I’ve been nauseous all day and I think I am starting to get dehydrated – so trying to drink as much water as I can without it coming right back up.
I am glad that I researched ahead and know that some of these things can happen with this treatment. If I had not, I would probably be really concerned right now.
I will post back again in a few days with another update of my experience. I am still very optimistic that this treatment will be effective and extend my life.
Rick
Welcome back Ted and Lainy. I’m so pleased that you had a good trip to Wisconsin. It sounds like it was just what the Dr. ordered and you all had some very good quality time together. I just wish it was under better circumstances for you. I think the idea of consulting with Hospice is great, if they think that Teddy could benefit. I’ve thought many times about calling them myself.
Good to have you back with us.
Rick
