Under treatment with Therasphere
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Walkingthepath, I love your attitude!
My big mass is also located just over the gallbladder, it was like yours but a little bigger when it was discovered 1,5 years ago. 10-15 small tumors made it unresectable. Chemo (first GemOx and now Gem+Xeloda) and 4 chemoembolizations (more or less the same procedure as Therasphere) has made it stable. The big one is not stable at all though, whats left of it is clearly dying.
IMustangMort, keep your sights high and far into the future, but cherish every day. Happiness and good feelings = good body chemistry and strength, depression and lethargy = not so much. We’re walking this road together and I hope to have your company for a long, long time.
Thanks. I’m just beginning this journey and I have a lot to learn and experience yet. I do have lymph nodes involved even though the primary tumor is apparently very small. Cancer cells in the lymph nodes don’t necessarily “shine” on a pet scan. Mine didn’t, but a biopsy confirmed they are there. I’m probably not a good candidate for much except maybe different chemo protocols because of the lymph nodes. I don’t know….I’m still absorbing a lot of information this past week or two.
MustangMort, No, no lymph nodes involved. I was nervous about having a PET scan because I pushed hard for it to be done – but if any other sites were involved they told me I would not be a candidate for Therasphere. My primary care doctor and GI internist had suggested the possibility that the tumor might have come from somewhere else, maybe the skin (this is Florida, after all) and I wanted to rule that out. I was a little bull-headed with my treatment team about finding out if there was any more bad news, but I was also really scared that there might be. And in truth I wondered for a long time if maybe the clinical trial team wanted me in only because I am a “healthy” candidate and didn’t really want to know if there was anything else. I’m happy to say we had a very frank discussion and put that fantasy to rest. All the staff at Moffitt from valets to intake to nurses and doctors are fantastic, they are very easy to talk to, empathetic, caring and patient.
Looking at what your story I have to say that I haven’t been through half of what you’ve been through. I don’t know if Therasphere is right for you but there are trials that are recruiting sort of close to you at Northwestern University and at UC San Francisco. The NWU trial is different from the others – they are using a chemo drug in combination to see if it makes the yttrium90 more effective.
It does look like you are in excellent hands but don’t be afraid to ask lots and lots of questions of your doctors and if you don’t understand the answer, ask again. Write down your questions at whatever hour or place you are when you think of them and take them with you to your doctor. Take lots of notes for when you forget something later or bring a companion to take notes for you – a second person might remember to ask something you missed. And if your treatment isn’t working get a second, third, even fourth opinion. There are a lot of dedicated people working to heal us but they haven’t come up with a one-size-fits-all yet. We may win this or we may lose but we’re not going down without a fight! Peace and good thoughts for you and yours.Hi Walkingthepath,
Welcome to the site. Sorry that you had to find us all here but I’m glad that you have joined in with us all as you have come to the best place for support and help, and you will get a ton of both from all of us here. And thank you so much for sharing your story with us all. That is such a lot that you have had to deal with lately and I know that your description of your Therasphere treatment will be of great use to many others. So thank you for that.
Glad to hear you say that you are starting to feel better now and I hope that this continues for you. And I so hope as well that your goal of tumour shrinkage is achieved so that your doctors can go in and do a resection for you. Keep coming back here and if you have any questions then just ask and we will all do what we can to help in answering them. And please let us know how things go for you.
My best wishes to you,
Gavin
Walkingthepath-Welcome and sorry you had to find us.
I am glad Blue Cross isn’t adding to your problems. Blue Cross has payed out over 2.5 million dollars for my CC battle and never gave me any extra stress. Also a CC diagnosis qualifies us for disablity. SSD has a 5 month wait, since you were diagnosed in June you are close and I believe can apply now. It was 2 phone calls and online app and within a week had a YES answer. I know SSD isn’t a financial answer but if needed at least it is there.
Lots of prayers-Cathy@mustangmort, the large tumor is on the lower lobe of the liver over the gall bladder (well, where the gall bladder used to be) but also extends into the liver and around the main bile duct. When they went in with a scope on July 5 they found the tumor wrapped around the gall bladder, literally crushing it, and they had a hard time getting the duct to the gall bladder free. They took a fairly big section out with the gall bladder but because they were doing it from a scope they didn’t take everything. And from what I learned later they wouldn’t have been able to anyway. Not sure of the exact details of how it’s intertwined inside the liver but if I understand my doctors correctly it’s wrapped around enough of the main duct that it is not a good candidate for resection at this point. Our goal is to shrink the tumor enough that resection can be achieved with minimal reconstruction. Honestly I’ve had a long discussion with myself, my family and with the doctors asking why we couldn’t just cut the stinkin’ thing out and I am confident with the doctors assessment. I should also add FWIW that I am a white male 54 year old, non smoker (quit about 20 years ago), was taking simvastatin and before that Vytorin before it was taken off the market. Stopped taking the statin after the treatment because I want to eliminate any possible stress on the liver. (Shame – a beer would have been nice while watching the games this weekend…) I have a very high-stress job – this last year was really tough and probably weakened me and allowed the cancer to take hold. I am working on making my job less stressful. I’ve told my supervisor that when I get tired, I’m leaving – period. My company is being very supportive! Also, Blue Cross Blue Shield has been paying without question which has lowered my stress a lot. This has been very expensive – with the ER and gall bladder surgery included I’ve incurred over $200,000 in bills and my family’s share so far is (only?) about $6,000. At least my yearly deductible has been met
Hi,
I assumed you had Therasphere radiation treatment for the right lobe of the liver and the 2 small satellites lesions are in the left lobe of the liver.
If I am right,then I think you should discuss the possibility of having
RFA radiation treatment for the 2 small lesions in the left lobe of the liver. The best result for RFA are obtained from the size of 3cm or smaller tumor; and it is easy to do.So try to talk with the doctors before the lesions become unmanageable.
God bless.Dear Walking the Path, welcome to our wonderful family, what an amazing story and I hope for you to just keep walking that path and going forward. Glad you decided to leave the lurkers and to join us as we don’t have many posters who did the Theraspheres and you may become the go to ‘Theraspherer ‘. Continued best of luck and glad you are feeling better. Please keep us posted.
Hello all, this is a great site and I’ve been lurking since my diagnosis in June. I found out I had some type of liver cancer after going for a regular 6-month checkup to monitor the statins I’ve been taking to keep my cholesterol down. I was sent for an ultrasound and then an MRI and then a CT-guided biopsy. Good news is we caught it fairly early – a 6.5 cm mass above and around the gall bladder and a slightly smaller diffuse mass in the liver plus possible cirrhosis. There’s no history of internal cancer in my family and I’ve never had hepatitis, nor do I drink except the occasional social event. Bad news is the doc and radiology tech doing the biopsy totally screwed up and completely missed the tumor. Luckily? on July 4 2011 my gall bladder finally gave up and when it was removed the next day we got good images and tissue samples. I was referred immediately to Dr. Richard Kim at Moffitt Cancer Center in Tampa. The details of the day I visited him is a little cloudy now – I’d been pretty depressed after reading about liver cancer and CC and had a hard time concentrating. Dr. Kim told me that the large tumor was in fact CC, and that the consensus of his team was that the tumor was not resectable. The mass inside the liver was determined to be a hemangioma, and the cirrhosis is likely a peripheral effect of the tumor. Dr.. Kim said I was an excellent candidate for Therasphere and said they had seen very good results with it. I decided to meet with Dr. Bulent Arslan and Dr. Ravi Shridar, who asked me to participate in their trial. I went in for the preliminary test procedure on Aug 1st and received the Therasphere beads on Aug 8th. A PET scan before the procedure found two tiny “satellites” near the large mass but these were not treated because they were in another lobe of the liver. Procedure went quickly and almost painless – done through the groin and no port needed! (I can go into the details of the procedure for anyone interested.) I was sick for almost three weeks – constant belly pain, irregular movements and borderline nausea as well as lack of energy – but coped with a medrol pack the first week and pain meds after that until my energy came back. Had to make an effort to eat but was disciplined and didn’t lose weight. Went for followup MRI and CT on Sep 8th – the tumor is inflamed and appears to be weakening! However the two satellites have grown slightly but are not yet large enough to warrant this type of treatment. So now I wait until November to reassess and possibly (hopefully) treat the satellites. If they are still small I will ask if they can be resected. All things considered I’m feeling better every day and much more confident about being able to work. Still have localized pain especially at night lying on one side or the other when the tumor pushes against other organs. Reading other posts I guess I should get more info about my blood tests as that seems to be useful information to many? Anyway, I know it’s early in the game but that’s my story for anyone considering this therapy.
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