my diagnosis of advanced cancer: how to help my kids

<p>Good morning, sunrise. I hope you’re gaining your strength. Enjoy your trip to Israel and the wedding!</p>

<p>And eat!!! (Think of every Jewish mother who has ever lived when you read my admonishment.)</p>

<p>Yes, yes, sunrise, please eat! Since you are so good at adhering to taking the prescribed drugs, think of the food as another medication you have to take to win this battle. :slight_smile:
Sending positive thoughts…</p>

<p>Thinking of you, and the others who post here, in shul this weekend.</p>

<p>Sunrise - you continue to be in my thoughts and prayers.</p>

<p>sunriseeast-may you be sealed in the Book of Life!</p>

<p>Sending you positive thoughts, Sunrise. When I lost my appetite due to illness several years ago, I found there were only two things I could eat and ate them daily at a time I knew (from experience) wouldn’t make me sick. Like others have said, treat it like it is medicine. Calories have to be taken in. The only two things I could stomach were Tuna Salad and frozen yogurt.</p>

<p>When I lose my appetite due to the chemo treatments I am undergoing, I am able to stomach Pinkberry with strawberries and mango. Also I can deal with potatoes, especially french fries. I find myself going to McDonalds for the first time in my life for a order of fries and a vanilla milkshake. Bland starchy stuff, not the healthiest, but calories.</p>

<p>I always look for this thread…hoping for a good news update soon.</p>

<p>Sunriseeast, hoping that you are doing well! Sending positive thoughts your way.</p>

<p>Thinking of you, sunrise.</p>

<p>Adding thoughts & prayers for you</p>

<p>sunrise, I didn’t do the math but have a hunch from your previous post that you might be in Israel celebrating the wonderful occasion of your nephew’s wedding. If so – many blessings to the happy couple; and to you.</p>

<p>thank you all for checking up on me. </p>

<p>Last night we got back from Israel. Today, I spent a whole day at my favorite day spa in NYC (memorial sloan kettering cancer center). I am a clinical trial guinea pig, so I need to stay around for hours after the treatment for them to collect my blood for research analysis purpose. Everybody is after my blood these days - literally.</p>

<p>This treatment protocol is much rougher than my initial 18 weekly chemo infusion for which I hardly developed any side effects. This new one is knocking me out. Not the main chemo drug part- to which I continue to have no side effects (by now I believe I am immune to chemo side effects :slight_smile: ), but the experimental immunotherapy drug is a tough one - but I think the fact that I am developing a severe flu like symptoms is a sign that it’s working as it supposed to.</p>

<p>I noticed lately that there are several folks replying to this thread or sending me PM who have similar issues as mine or have a spouse in a similar situation. So, I would like to share an encouraging piece of news here.</p>

<p>While we were in Israel, we had a lunch with a friend who is a physician in an integrative oncology center in Haifa (the first in Israel). She invited her friend who is a survivor of advanced cancer and also a venture capitalist. Some of you may know that Israel is known for cutting edge bio science development (together with the high tech field). This venture capitalist is a primary investor of a startup that has developed immunotherapy for cancer.</p>

<p>It’s a long story, but in a nut shell their therapy is based on the discovery that in most cancer patients, the microphage, the cells that are supposed to devour foreign objects AND cancer cells, are somehow not activated. So, the idea was to find a way to “reactivate” microphage. They developed molecules that reactivate microphage, and a treatment protocol that injects these molecules into the patients that will hyper activate microphage. About nine months ago, his cancer came back (lung metastasis 1.5cm x 1.5cm) and couple of other spots. Instead of getting a surgery or chemo, he decided to subject himself (with questionable legality since this is NOT an approved drug yet in Israel either) to the weekly shot of this immunotherapy drug. 9 month later, a COMPLETE REMISSION! He actually showed me, on iPad, his own scan images of lungs taken on a monthly interval.</p>

<p>I don’t know whether you followed on the immunotherapy angle, but in all the literature I read, it’s always given, in clinical trials since none has been commercially approved yet, as a complementary treatment or as a supplement (as is the case for me on the clinical trial) to the main line chemo drug. This is the case for me on the MSKCC trial: Doxil as a proven main stream chemo drug plus the immune enhancing drug (the experimental one). Or in other kinds of clinical trials, it may be given as a single agent PREVENTIVE treatment for those already in remission. I have yet to see a single reported case where the immunotherapy was used as a single agent THERAPEUTIC agent to deal with aggressive disease.</p>

<p>I was blown away by the implication of this discovery - imagine, no chemo and body’s own defense turned on to the maximum efficiency. Note that this treatment protocol is likely to work for most type of cancers, not a specific drug for specific kind of cancer. As such, the implication is even more staggering – rare or orphaned cancer patients now have a real hope: till now most new drug development targeted for a specific kind of cancer leaves these patients with very few options: not large enough a market for a drug company to invest in research and drug development. </p>

<p>I felt very hopeful. Granted, it will be years before this may become commercially available. Granted, this treatment may not work for every case – maybe only a certain percentage of patients. I know I can’t base my hope on a single case of an amazing success. Still, the overall direction of where the cutting edge research in immunotherapy is taking us all is very encouraging.</p>

<p>As someone whose remission from the front line therapy only lasted 3-4 months, which makes me platinum resistant (meaning resistant to the best workhorse cancer drugs that happen to contain platinum), the chance encounter with this venture capitalist gave me a lot of hope. I was still digesting the latest research report I read recently that said the % of platinum resistant patients responding to the second line treatment is less than 20% and the overall survival prognosis is measure in weeks (like 60 weeks median), rather than years, so this lifted my spirit a great deal. He offered to have the drug available to me through the back door if I exhaust all the options… However, that means I have to move to Israel for 6-9 months. As much as it is the case that all of my in laws in Israel are amazingly nice people, I hope it won’t come to that :slight_smile: I wouldn’t want to overstay my welcome to this degree !!!</p>

<p>Anyway, a lot of exciting stuff happening. It gave me hope. If I just manage to buy more time with every remission or stabilization of the disease, there may be a real solution around the corner.</p>

<p>PS: this venture capitalist now plans to be a management team of this startup. He has a personal stake. He will try his best to make this a success as if his life depends on it - and it does! Besides, the two main researchers in this startup are medical doctors whose wives developed advanced cancer. I guess this is a personal venture for all the main characters in this company. Good sign.</p>

<p>Exactly, exactly exactly!!! Hang in there for the next wave a treatments to be developed. I do believe there will be a cure for cancer… it is just a matter of when.</p>

<p>Sending you lots of prayers and wishes.</p>

<p>Well, this is exciting indeed :slight_smile:
Strength and all good things to you!</p>

<p>Welcome back from Israel. Thanks for sharing that exciting information! </p>

<p>Best wishes this week. Don’t forget to rest and eat! Be well.</p>

<p>I believe we are starting to see the curve reaching an asymptote when it comes to development of cancer drugs that kill the cancer cells more efficiently. There is a limit on far that it will go given the cancer cells’ own ability to mutate to avoid carnage. Plus, there is a limitless variety of cancer cell lines. A real breakthrough will come from the other side of the equation: the body’s own defense. After all, this is why most people do not develop cancer: cancer cells are there all the time, but in a majority of cases, the body itself keep them under control.</p>

<p>From this angle, the implication of immunotherapy is even more staggering. The rare or orphaned cancer patients now have a real hope: till now most new drug development targeted for a specific kind of cancer leaves these patients with very few options: not large enough a market for a drug company to invest in research and drug development. This is my pet peeve for those with a fetish for extreme free enterprise mantra. Wait till you develop a rare disease - no “free” enterprise will want to invest $$$ to develop cure and treatment - not large enough a market size to justify hefty investment. It’s the, gasp, evil government that funds research of this sort - precisely the kind of funding most avid anti tax ideologue would like to eliminate. Sorry for turning political. Now, back to the regular programming…</p>

<p>There are many promising leads in the immunotherapy angle for cancer treatment, not just this particular case. It’s just that this venture capitalist own personal case is so eye popping significant, I was blown away. Anecdotal or not, it is very encouraging.</p>

<p>by the way, for those who would like to google, the correct term is macrophage, NOT microphage. Sorry for the typo.</p>

<p>Yes, that IS very encouraging! Call me crazy, but I believe in fate. There was a reason you bumped into this man. We don’t know what it is yet. But, may it lead to something very good. </p>

<p>I hope you have an easy recovery from your latest “spa treatment.” When I look out the window I see this weather is good reason to just be a couch potato today.</p>