michele
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Hi Colleen -thanks for the update -your news is heartening. Our news is pretty good too -the MRI after the 2nd showed complete necrosis on 2 tumors..yay! They went for a 3rd ( and probably last as his portal vein has an embollus), and hit hit with maximum dose so the big tumor on right side could be zapped. Am not sure what will happen after the next MRI at end of Oct. Let me know how things for you all.
Robyn, hope you find some treatments, please share your news with us. MicheleSonya -we are in NO VA and being treated by Georgetown Univ by one of the top G I oncologists Dr John Marshall. There is not a huge list of experienced oncologists for this disease, they all seem to know each other, and are in contact with the same resources. This disease has so little data and approved treatments, that this site will be very helpful to you. Like Colleen’s husband, my husband has also had some initial positive results with chemoembollization, and it has allowed us to get off the roller coaster for a bit of time this summer and live normally. Also had to appeal to insurance company -but we were finally successful, and the battles will probably continue…as so much of these treatments do not meet guidelines, there are too few of them.
Cindy -this is so shocking to those of us who are living through CC with our loved ones. Please get the best GI oncologist to diagnose this, or come to the National Cancer Institute to get some help. This is so shocking in someone so young. My proyers will be with you and your little one…
HI Colleen, we too are enjoying a pretty normal life. Tom working long hours for a special project, regaining strength on weekends, but even then not too tired. The systemic chemo has had virtually no side effects, he has a little nausea if he doesn’t eat and take Zofran regularly. We are even planning a 2 week vacation after recouping from the 3rd embo, since this one was so easy. However we do have MRI and ct scan to go through first. will let you know how it goes.
Am glad Fred is bck to work, let me know about theraspheres (radiation?), as Tom too, doesn’t want to simply be monitored. But we can be grateful for these times, am dreading the end of the embo’s really, as they give us time to hope and live normally. Hang in there…Colleen, I missed your last post as our eldest son was getting married. Tom’s 2nd embo went Ok, nowhere near as much pain and discomfort -about 6 days down. Am wondering if most of the discomfort is caused more by the response to pain killers etc…may consider acupuncture on 3rd go round in midSept.
Am wondering how things went for you all this week with the 3rd embo…the growth and reduction is not surprising to me. We were told that there had been some growth as well after 1st MRI, on one tumor on left side side. So this time he is taking Xeloda between treatments…see if the systemic chemo will affect new growth. Let me know how it went, am thinking of you.Thanks for the update Colleen, am so glad this time was easier, gives us hope. But to be honest we only had 10days-2 weeks last time until he resumed normalcy and mostly because we had simlar issues with the pain killers, which triggered the nausea and the the extreme fatigue. This time we feel more prepared. Am anxious to see the reults of the MRI next week. ( have you found out anything from round one?) You all should have some reprieve right now, this procedure has it’s plusses. If we can be sure it is working….
Will post late next week after round 2.Hi Colleen, hope the 2nd embollization went OK? My husband goes through it next week. Have been enjoying normal life for past 10 days, no pain, good energy, back to work. If this treatment works, and we learn to control the side effects better, this is do-able. We are considering doing systemic chemo along with the chemo ( no data available for this but onc suggested we try it), taking Xeloda which he reacted well in the past. Oxycodone worked well for him and we also switched to Oxycontin after a bit.
Tom was diagnosed in late Feb, 11cm tumor on right lobe and 2 tumors under 3cm on left lobe. No other sites.
Hoping it went well for you this time…Thanks for your reply Colleen. Sorry about the delay in replying.
The drug alluding spheres is when chemoembollization is done with spheres filled with chemo that are shot through the catheter by the interventional radiologist ( a yop guy at Georgetown”s Lombardi Center). This technique is fairly new but thought to be less traumatic as the spheres release the chemo only in the liver and very little goes through the system. The spheres then help choke off the blood supply to the tumor. He is having a 2nd one in mid July, and after a tough first week, now he is simply tired with some pain in the liver area and shoulder ( which we are trying to find the right painkiller as Oxycodone stopped working after 6 days). He is able to go to work ( shorter days) and feels basically better each day. Pretty similar to your husband, and next week he will be on a systemic drug Xeloda to keep up the battle while waiting for the next round.
We are also hoping for successful reduction and or stabilization-and would be interested in your feedback after the 2nd embollization is done to your husband.
Good luck – will be looking for your posts in the future. Our oncolThanks Jeff -am also anxious about the healthy liver tissue obviously. I think this procedure is pretty cutting edge but not unknown…however not many interventional rediologists do it. I will keep everyone abreast of course. It has been scheduled for June 6th now -please keep us in your prayers.
My husband was flying helicopters in Vietnam and has cc now -diagnosed 3 mos ago. He is 61. I am in the process of talking to VA as well, it takes a long time and big numbers to actually have a cancer listed as Agent Orange. My firend lost her husband 8 years ago to esopahgeal and it was not an agent orange cancer then -it is now. I think all of us with vietnam vets with CC should be talking to the VA -the cancer is so rare, the numbers so small, we need to do something to promote research and development for this cancer.
my husband runs fevers sometimes too with Gemzar…we lick it with Tylenol -no more than 10000 mg per day
Thank you -have made some progress -the insurance company backed down on appeal forchemoembollization and when he finishes the next cycle of chemo will look at this alternative. Am still trying to learn all I can about the treatments for this disease, of which ther is so little out there…many thanks for your experience and advice.
Many thanks for the info our thoughts have been going in this direction too. Will be conferring with liver surgeon very soon
