holly22a
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You crack me up and you inspire me, Serena Regina! I would love to go on the MEK trial but I need a tumor and I need platelets. Oh well. For now my news is all of a sudden all bad – – tumor markers all up a little between July and August and then up 6-fold August to September and 4-fold more to October. Had a partial splenectomy which did not apparently work well, platelets still too low for chemo. (You can do a repeat but my goodness not back to back – – horribly painful surgery) So I’m a sitting duck now with ca-19 of almost 8000 and AFP of 3000. Things can turn bad so quickly. My oncologist is ever optimistic, but we are running out of choices even though the scans show no visible disease – – we know it’s there and very busy. I always read that the mixed HC and CC tumors are aggressive!
HollySo sorry you are back among us in this way, Sandie. I had high doses of gem/cis. Tolerable with the anti-nausea meds. Third week, the one “off” was always nice. I got terrible neuropathy in my fingers but it went away when I went off the chemo. I am desperately tryng to get back on, but not enough platelets. Good luck. It’s a strong a proven regime for cc. all fingers crossed! Your attitude is amazing. Thank you for sharing your vibes with us, you make me feel better to know you. ~Holly
welcome to this site! First off I don’t know anything about leg clots — that’s the way it is with this cancer: different for each person. Second, never listen when they say (guess) how long you have to live. Seems like they tell everybody 6 to 9 months, regardless. Many last an awful lot longer, years, even. Get lots of second opinions — I got 4! But knowledge is your best friend with CC. Post your questions here, often. Somebody else might be wondering the same thing. We all learn together.
Good luck to all. Holly (1-year survivor with clean scans but elevated markers)oh, the trials of markers!!! mine were the lowest they have ever been in june at 211. They doubled to 435 by august but went up six-fold from august to september to 2500. scans still show no disease visible. SO we are fighting numbers! It’s all too little to see. I would be so happy to get anywhere so close to normal. There is just sometimes a little variation in the test, differences in your blood volume or pressure that day, lots of little things that can affect the markers, even inflammation. PLease don’t worry till you have to! Enjoy the “no tumors” part of your checkup! Time to rejoice! Praying for you …
I’m quite a bit further along but thought you might like to know …. after months of cis/gem then surgery and y-90, my platelets have been around 50 to 80 for six months now and are never coming back on their own. So I am having an embolization of the spleen so I can go back on chemo or get into a trial. Apparently that can kick out many platelets, if your spleen is enlarged, which it is in many liver disease patients.
Dear Mary,
You have already been so brave. It does seem so hard when a door closes and with this cancer we start with so many doors already closed to us. But we go on and do our research and try this and that – – I took my 15-year-old daughter to an appt with my oncologist with me and afterwards my daughter said, “Mom you talked so much and asked so many questions. I have never been to a doctor appt where the patient knows as much as the doctor, it seems” ! there are only one or two established protocols for this cancer and then everybody, every one of us, is outside the box, so to speak. We are all trying to figure out what next, what am I comfortable with? What is my intuition telling me? It can be so overwhelming. Some days I just want someone to take over and just tell me what to do! My right lobe had lots of tumors so y-90 was a good choice. And I think you can inject alcohol into lymph lodes (Percy knows all about this) But chemo is the only way to control those outside tumors unless they can be ablated, so maybe they can! Don’t think you are running out of choices! And please keep writing. It’s just as therapeutic for the rest of us who are suffering to lend an ear to a fellow traveler as it is to unload our own worries. Sending you many hugs.hugs, prayers, healing thoughts on the way —- and tomorrow is my birthday so I will think especially happy thoughts about you, dear Lisa!
No, my teams are at New York Presbyterian and Hopkins. One of my oncologists is Dr. Azad (Hopkins) and she’s on the trial. Most trials have several sites. You can also go to Houston and maybe other places, too.
thank you as always, Gavin, for your postings. This is a fascinating article! For me, who cannot do any more traditional chemos, this looks promising. I will look into it with my dcs.
Dear Percy,
I am praying every day for new immunotherapies for us all! I cannot do the TIL trial because my counts are rather permanently low now. But I’m still thinking radiation and rfa as soon as something shows up to radiate. Meanwhile, since my markers have quadrupled this summer, I am thinking xeloda, the one chemo option I have with low counts already. I have one onc who says xeloda alone is not effective, but another who says it is! Wow, so many decisions to make for ourselves. Please keep us posted about your therapies, as I always look for your postings on the boards. Keeping you in my thoughts and sending much good energy and love to you.
HollyThanks, Jason. Wish I had seen that before my RE — I can see that waiting on a return to chemo is a good idea and I can see that steroids would help. It just makes sense, doesn’t it? So if and when I have another RE go-around, I’ll ask after this protocol.
Hi everyone!
I was told by two great surgeons (Dr. Kato at NYP and Dr. Facciutto at Mt. Sinai) both in charge of major liver transplant centers in NYC, that transplants for CC are a problem because you must take anti-rejection drugs for the foreign liver and these drugs suppress your immune system further ….. and the cancer just comes back in the new liver and everywhere else. Dr. Faciutto told me that as I had no cancerous lymph nodes, no mets but inside the liver, he thinks my immune system is keeping CC at bay elsewhere in my body and that a transplant would result in CC metastasizing elsewhere. The cells are in your blood. I was told (rather pie-in-the-sky) by Dr. Kato that if the liver went quiet and there was no sign of CC for one year, he would do a transplant. For me, I would at that time count my unbelievable blessings and turn down the transplant and take my chances with my own immune system intact, I think. Who knows. I do think we will see an increase in CC transplants because the protocols were set so strangely and almost capriciously (this opinion from my surgeons too). Why for ECC and not ICC? Also, in Italy, you are considered an organ donor unless you opt OUT. Here, you must opt IN. I wish we could change our laws! Then there would be plenty of livers, at least. But I ramble ….I had theraspheres in February two short weeks after a liver resection that took my left lobe but was only palliative as there were also small tumors on the right that were left in. The two weeks following the spheres were like the flu with fevers and tired and then all better. The surgery was the hard thing to recover from. But then in parts of April and May I had a series of recurring fevers and an overwhelming lethargy – – every time I stood up I felt I would shatter into pieces and end up in a pile of shards on the floor — it was wierd. By the end of May that was all gone and my markers were all much lower (but never back to normal) My interventional radiaologist says the tumor necrosis factor caused the fevers and that the tumors were dying off. Sure enough by scans mid-July I had no visible evidence of any disease, no tumors, nothing. I have had an absolutely wonderful summer and have felt, other than tiredness, much better than I did when I was diagnosed in October 2012. I have not been on any chemo or anything since January because my platelets are shot. The bad news is that my markers doubled between July and August so I need to move on. I am getting new scans this week. So I believe that the combination of surgery to de-bulk the tumor load, followed immediately by the y-90, bought me six months of good times with my family, even with the fevers. So I am a fan. You can only do y-90 twice. I would not hesitate to have another go down the road with it. I hope this helps. email me if you have any other questions about my experience with y-90 radioembolization, and good luck!
Holly
