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  • in reply to: Platelets loooooow! #19942

    Hi Jeff,
    Wow, I read that about your platelets and thought to myself “wish mine were that high”. My platelets run around 8 to 15. Even when I went off of chemo for a year, they never got up to more than 101. Since doing chemo, it’s been the one thing holding me back from regular treatments. In fact, they told me today, there’s nothing more they can do because my platelets are just too low and I can no longer have the transfusions. My body has been rejecting the tranfusions and my body isn’t producing new ones for some reason. My doctor would be thrilled to see my platelets at 42.
    It’s just a reminder to me of how different all the Oncologists are in our treatment and how varied all of our treatments are.

    Anyhow, something my doctor did tell me about that could raise your platelet counts. A drug called Numega. I’m not sure if that’s the correct spelling or not. But you might ask your own Oncologist about it. My doc won’t give it to me, because I’m too low and I guess it can be a pretty nasty little drug to some. I haven’t done enough research on it yet (in fact I was getting ready to post something about it asking if anyone else has tried it and thier experience with it).

    Please let me know if the Gatorade is helping. I haven’t heard of that one either, but it’s worth a shot for sure!

    Also, I remember you saying you take Milk Thistle and I’ve noticed a few folks on here take Milk Thistle. My doctor doesn’t want me to take that because while doing chemo, she thought it would not allow me to retain the chemo in my liver for very long. (Now that I’m not doing chemo any longer, I may as well start using it again). But I wonder, have you (or anyone else on here) had your doctor veto the Milk Thistle?

    Hope you enjoyed your camping trip Jeff and got your much needed rest!

    Sorry if I seem a bit curt this evening. Guess being told “there’s nothing else we can do” has got me in a bit of a mood!

    – Kel

    in reply to: Oxaliplatin plus #21396

    My oncologist tried to get the Oxaliplatin approved for me and my insurance rejected it. I didn’t know about the Compassionate Use Program until your post, so thank you for putting the question out there. Now I have something to go back to my Oncologist with.
    I’ll definitely be reading everything I can about anyone being treated with this chemical and combos.
    Please keep us posted in the progess.
    My prayers are with you.
    – Kel

    in reply to: Hello everyone – I’m new here #23043

    I just (as unfortunate as this is) wanted to say welcome to the website. It’s been an incredible help to me and my family and I’m sure you’ll find the same. Thank you for sharing your struggles with us. Your family will be in my prayers.

    – Kel

    in reply to: Not sure where to post? It’s been over a year… #19447

    Thanks Lisa and Mercedes. Both points of view are helpful to me. Lisa…. I’m there with you. I wish my son had other siblings, and although he doesn’t, he is very, very close with my sister’s two kids. They are like his brother and sister (his roommate is one of his cousins). And I have a very tight knit family, and I know that they will be here for him. Instead of one mom, he’ll have 4! But no one is like your mom, ya know? I really, really hope you get to see your kids graduate college and so many other wonderful things with them, before your body leaves this world. I will keep you in my prayers.
    Mercedes…. thank you for the input of a daughter who knows her time is a bit shorter with her mom. You sound like such a strong person, your mother comes through with you in your words. She’s lucky to have you and you to have her I’m sure. Thank you for your post. And I will keep your family in my prayers as well.

    – Kel

    in reply to: Not sure where to post? It’s been over a year… #19444

    Hey there everyone!
    Soooo very much has happened since my last posting. Boy oh boy, it’s been a roller coaster ride. A new roller coaster ride. I hopped off the other one, and onto a longer, dippier, heavier duty one!
    So after they did the CT guided RFA back in late May of this year, they felt really confident that they got everything that may have been the CC coming back into my liver. They wanted me to get a follow-up CT Scan w/Contrast done in July just to be sure I was “healing” correctly.
    My doctors called me with surprise in thier voice when they told me I now not only have way too many “tiny” little milky-way type spots in the left lobe of my liver but I also have a new lesion measuring 5cm in the right side of my liver and 3 lymphnodes involved as well. I am no longer an option for surgery of any kind.
    So now my Oncologist has me on “palliative care”. My surgeon initally made everything sound like I had just a few months left. But my Oncologist is hoping to give me two years (I’m hopefull for more of course!) by doing chemo.
    I’ve been doing Gemzar-Taxol-Avastin since the later part of July. Initially she wanted me to do 3 weeks on, 1 week off. But after my second treatment, it was very apparent that wasn’t going to happen. Knocked me on my behind in a big, big way. My WBC’s, RBC’s and Platelets dropped out of the bottom. I spent 5 days in a neutropenic state, with daily transfusions. Platelets went the lowest down to 3 (as in 3,000). I had no go-juice in me what-so-ever!
    So she decided 2 weeks on, 1 week off. Well that didn’t work out so well either.
    I took a break, because it’s really about my quality of life, as I see it and went to Hawaii with my entire family for 10-days. Time stood still while I was there. I didn’t realize how much so, until I got back late, late at night only to go to chemo the very next morning and start again. I thought having 3-weeks off would be good. Charge me up and get me ready for another go around.
    But chemo was last Thursday and again, my platelets have dropped to the point of needing tranfusions again. But now I’m developing antibodies and soon transfusions won’t be an option. Has anyone else experienced this?
    I wonder if transfusions from my family members would be better? I plan to ask my Oncologist about that one.
    At any rate, now I’m doing chemo at 10% reduction, once every two weeks.
    My Oncologists hope is that in doing this chemo, it will ultimately stop the cancer from growing at best for a good while (yep, I’m pretty much hoping that too!) but if nothing else, she hopes to slow it down. She said I can have another CT Scan in two months to see if it’s working. The waiting is the pitts!!!!! That’s two months of my life, we could be trying something else, if this ISN’T working, right?

    So sometimes I feel like I’m okay with what I know. That life is going to be short for me. And honestly, I think most times, I’m okay with it. I am soooo incredibly grateful for the life I have, the family I have, the friends I have. Life is wonderful. Truely.

    But here’s my biggest problem in dealing with all of this…..
    My one and only son. My heart. My reason for living. He’s going to be 21 early next year. His father is in the picture, but they don’t live near one another. And I wouldn’t say my son is really close to his father. For years I guess I secretly felt like that was a good thing. I know I’m bad for admitting that. But I have my selfish reasons.
    The thought of leaving my son’s life is the most difficult part of all of this. I think of what a mess I was at his age, and beyond. And how I wouldn’t be the person I am now, if it hadn’t been for the love and support of my parents. And knowing I won’t be there for those hard, really hard times in his life, that we all go through. Knowing I won’t get to see him get married (he’s not in a relationship at the moment), and I won’t be there for his first child……. man oh man……. this is the absolute toughest for me.

    I’m grateful, because I have this chance to “prepare” as they say. And I’ve had more years with him, that other parents have had with thier children.

    But it doesn’t stop me from feeling what I feel.

    Suggestions? I’d love to hear from anyone who has lost thier parent, what they might have wanted or wished for. Or how any other of my fellow CC’rs are managing with it.

    This really is the hardest for me.
    Another long winded one! Guess I seem to “save” up and then vent, eh? This site really is a wealth of info for me and just as importantly… for my family and friends who have tons of questions I don’t really know how to answer. And they usually find their answers on here. I’m really grateful for this website. The info, the encourement, the sense of “being in this together”. It doesn’t feel so lonely.

    – Kel

    in reply to: Not sure where to post? It’s been over a year… #19439

    Thanks for the encouragement and info you both have shared.
    Miles, I’m sorry to hear about your wife Mary. She sounds like she has a solid support system and I hope the best for her treatments.
    I find it interesting that she too, is a Breast Cancer survivor.
    I wonder what her treatment protocol was during her BC, if you don’t mind my asking?
    And Jeff G, thank you for sharing more about your own battle with this. It’s very obvious in your postings, the fighter that you are. It’s motivating for people like me.
    I’m finding it helpful reading what others have to share and especially knowing you know where I’m coming from.
    I had a Dr. at Stanford when I was first diagnosed, tell me I wasn’t a candidate for the cyber knife procedure. But that was while my tumors were larger. After chemo, they shrank initially and I was able to do the RFA in Dec 2006.
    I am curious about the cyber knife though, and I’ll be sure to ask my surgeon for more details and the pro’s and con’s of RFA vs Cyber Knife.
    My surgeon tells me the tumor is once again, very close to a main artery, making it very difficult to get to and do anything with.

    Thanks so much,

    in reply to: Intro…sorta newly diagnosed #14529

    Thank you so much for the links and the info on the chemo therapy.
    That’s exactly why I’m pushing my current Oncologist to fully diagnose me with CC. As I mentioned earlier the Doc’s at Stanford are 93% sure it’s CC and she doesn’t seem to want to entertain that idea at all. Which I find very frustrating because of the chemo treatment alone.
    And you’re right….. two weeks ago I had my first cycle of Taxol / Carbo and my hair is steadily falling out.
    With 5FU, it’s my understanding everyone is allowed a “lifetime” dosage of no more than 500mg. And I had 300mg back in 1990 during my fight with Breast Cancer. But I will certainly ask her about having the Gemcitabine along with the rest of the 5FU. She wants me to do 3 rounds of Taxol / Carbo before we try something else. And her reason is because she isn’t 100% positive of just what kind of cancer I DO have. Frustrating, frustrating, frustrating!
    And the diet link…. thank you! My way of thinking is, everything I put into my body at this point is going to make my liver and bile ducts and etc work that much harder, taking away from it’s concentration to fight this cancer. So it’s hard to eat and yet I know that’s a necessary thing. So I will definitely check into your link. Thank you again!
    On the Avemar, I plan to see my naturopath next week, and I’ll mention it to her and see about getting on it myself. She has me taking three other natural herbs that have been proven beneficial in stopping the tumor in my liver from growing, if not reducing it. So we’ll see what happens.
    This website is awesome! It’s been a wealth of info and support for me and my family!
    Thank you,

    in reply to: Intro…sorta newly diagnosed #14525

    Thanks for the info on the cyber knife. Actually, Dr. So at Stanford said after three rounds of chemo, they would “revisit” the idea of cyber knife. So there’s still a bit of hope, I’m thinkin.
    And Marion…
    Thank you for the kind words. I don’t think I’ll ever stop looking and hoping. I remember reading a post by Stacie along those same lines. Continue to find more opinions. And of course, each and every one of them is different.

    Thanks again,

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