holly22a
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Thank you, Jim and Denise, for sharing your story here. I love to hear all about your “alternative” journey. We all try to decide what sorts of treatments to add to our regimens, or when to try other things entirely, but to know folks who are actually walking that walk, well, it is just really nice to know about, it is something to add to our thoughts. I am so happy to hear things are going well for you, Denise. I hope for all the time in the world for you!
Jim: I am so happy to hear your wife is doing well on this regimen! As a biophysicist and cc patient myself, and one who uses accupuncture and diet as part of my overall approach to this disease, I was interested to read your posting here, a most welcome posting. My only question about ANY alternative therapy is, why no evidence? Why have these alternative therapies and their founders (or the folks making money from them) never been put to the very simple test of scientific randomized trials? Anecdotal stories like yours are wonderful. There are a lot of them out there. But who is to say that your wife’s tumor might have stabilized anyhow, or who is to say it’s the diet vs the prayers vs the machine?? I would LOVE to see these alternative therapies join the scientific world and be willing to be tested! To have actual DATA on any of them, as opposed to stories, would be the best thing ever and would be a tremendous service to all of us working to learn and to devise a plan for ourselves. So we all just try to pick and choose and use therapies where we can, kind of flying in the dark. Whereas traditional medicine is all about evidence and facts. That’s what bothers me. So keep up the really good work with your wife and thanks for listening to my little frustration rant! ~Holly
@ Marion, the date is two weeks from today, January 31st, my middle son’s 20th birthday and so an auspicious day for me. I had chemo lite (gemzar) one week ago and they want the time off before surgery. Is that normal?
@Susie, what (hope you don’t mind me asking) is a bowel prep? Like before a colonoscopy, to empty everything? Sounds like a good idea.I am very excited of course and terrified. Mainly I am afraid they might change their mind or a storm might come in … I want this so much.
Oh Lisa, I have been thinking abut you all day. Hoping that radiation is going strong against those little upstarts, praying for it to all disappear. Poof!
Thank you Lainy. You really comfort me and I deeply appreciate it. I have my three children and also the love of my life, with whom I have shared only 8 years. No matter what happens, I will be there with him and with my children. Where else would I be??!
For all of us, it is the same. Those golden threads cannot be broken, ever.
Second opinions are like a breath of fresh air. May be time for another set of eyes on this one. If you don’t get answers to your questions after trying repeatedly, ask someone else. Best luck on this one, I know nothing medical, but I ask a lot of questions and expect answers, discussion, etc.
I also thank you Lainy for sharing that thought. In my case I am that mother. It is absolutely heartbreaking not to die but to leave my children so young. I have always told my children that there is an invisible golden thread that ties us together that can never be broken. Even after I go, I will be right there for all three of my children (daughter is 14, the youngest) Orlysud, I know your mother is there right beside you all the time and I pray you will find peace in her quiet presence. It is a different kind of mothering and you will have to be strong and fill in the blanks, but never doubt that she is there, loving you.
Dear Jen,
I am so very sorry about your father. It is rather amaing that he did not suffer the effects of the cancer too much before he passed away. You did everything anyone would have done – – it is the silent killer because it sneaks up on you and you just have no idea you have it. None . We all ask and ask ourselves, what did I miss? Wasn’t there something I should have noticed? But no, we did not. It is often stage 4 before it is caught.
Never ever worry about bringing anybody “down” here! This is the most supportive and wonderful bunch of folks I have ever found. Ask questions, rant, cry, whatever, we are here to listen.
Condolences, Holly
(ps my dad’s name is John Howard – – always liked that name
thanks for this – having neuropathy problems in hands pretty bad and need to research. Thanks for all your help!
the next bombing commenced and I landed in the hospital… needed rehydrating and all meds by i.v. for 24 hrs. now out and home and much better. I believe the entire problem is that my onc gives mannitol with this dosage of cisplatin – – and it makes me have the headache from hell even morphine does not help, and I got somehow behind the 8-ball and started throwing up and then you just spiral down. Oh well, yes, at least I can just feel those darn tumors suffering with me! ha! Anyway, thank you all my friends for being the best support group EVER!
I, too, am on gem/cis. What dosage is your sister? They are good at managing the nausea with lots of drugs. I develop a terrible kind of migraine in the night after the first – – it takes lots of anti-migraine and percoset to get through. But they are gone the next day! The chemo is very hard on your gut – – experiment around. I take one-half dose of miralax every day to keep “normal” …. try to get a nap every day even if it is just 45 minutes – – that helps a lot with energy levels. the hydrating is perhaps the most important thing of all. Drink and drink water. If you actually feel thirsty you are already behind! Expect to have a couple days of just lolling around. It can feel like you are getting the flu, with all those chemicals in your body. The good news? It gets better every day here on out for three weeks! Good luck! Let us know how it goes for you both!
There is a shot that can be given to increase white blood counts. It is very expensive though most insurance will cover it. Maybe ask your oncologist. My sister who had breast cancer got it several times during her chemo. Sorry I don’t know more. Anyone else?
Hi! Wow, I get your anxiety and I totally recommend a second opinion because knowledge is power with this disease. I got like, four second opinions at the beginning of my diagnosis and would never hesitiate to get another at any stage of this journey. I have been treated at Johns Hopkins but am moving to Columbia/Presbyterian in NYC. I would say there is an excellent surgeon at Hopkins, Dr. Choti, but that CC is not the absolute specialty there and you should seek out the very best, the most knowledgeable, but also the docs whose passions match your disease. For example, Dr. Choti is really interested in/publishes on laparoscopic surgical technique and technology so that’s his thing. I realized my oncologist’s speciality is phase I and II drug trials – that’s why she’s not gung-ho on radiation and why I, who can’t be in a trial since I have too wierd a cancer, am not all that interesting to her. And so it goes. If I were you I would find someone for a second opinion who is absolutely in love with the pancreas. Welcome to the site and best luck to you both!
