<p>Fantastic news! Someday we will have treatments for cancer that do not involve poisoning the body or cutting off parts of it. :)</p>
<p>My SIL has applied for a Fulbright to do post-doc research in Israel. There is SO much going on there…I am so proud of that.</p>
<p>wow this is very hopeful thanks for sharing this news and glad your spirits are lifted.</p>
<p>I just started a cycle two of my clinical trial that involves Doxil (main chemo drug) and an experimental immunotherapy drug called VTX2337. Doxil is given once every four weeks. The experimental drug is given three times during the four week cycle.</p>
<p>This protocol has been rough for me. And, this is saying A LOT coming from someone who went through 18 weekly infusion straight without any break without developing any side effects other than blood count tanking and hair lost. I used to exercise 1 - 1.5 hour daily while I was going through the treatment.</p>
<p>The main reason is not Doxil. I don’t develop side effects to the chemo drugs. It’s the experimental drug. Its side effects are sever flu like symptoms (most immunotherapy drugs seem to have those as side effects). Boy, they were not joking. The day I get the shot, within 5-6 hours I develop severe chills and fever on an alternating cycle. The whole thing is made much worse because when I get the Doxil IV or this drug shot, I have to stay around 4-8 hours so that they can collect blood for research purpose. Remember, I am on a clinical trial, so I have to be a guinea pig. The next two days at the minimum, I am out of commission.</p>
<p>I hope that the fact that I have these reactions mean the drug is working (VTX2337). Earlier in the year, I was on a preventive cancer vaccine trial. They warned of similar side effects. I developed none. I flunked out of this trial (because I recurred). This time I have all the side effects they warned. So, hopefully, it’s actually good that I “suffer” like this.</p>
<p>Anyway, a month after the initial treatment, I feel that it’s already working. The creepy sensations in the abdominal and pelvic areas are mostly gone - this was also the case with the initial front line therapy earlier this year: withint 2-3 weeks, I felt that the treatment is working since the sensations abated greatly. my cancer cells proliferate very fast (zero to 100 miles in 30 seconds, sort of - meaning, clean tests and what not to recurrence with tumor implant in mere 3 weeks or so, not like most women whose cancer blood marker rises slowly for a few months before anything is seen on the scan. If the treatment had not been working, the four weeks would have intensified these sensations greatly, not reduced them. So I am guessing it’s working.</p>
<p>Furthermore, today at MSKCC just before I got the second Doxil infusion, I asked them to add TSH (thyroid condition) check to my routine blood test. The result came back very encouraging: it’s normal again. This is significant to me: Both at the time of initial diagnosis and the onset of recurrence, my hypothyroid condition went completely out of control though all those years the meds were able to keep in under control. When I was in remission, the number went back to normal. In this whole process, I am turning my body into a fertile ground for data mining for my inquiring mind. I am a statistician by training (well sort of… it was my minor in Ph.D. program), and gotta live up to my training. So, I decided to see whether there is a correlation between the thyroid condition and cancer. Seems to be the correlation is holding up. This should be interesting to other cancer patients with an existing hypothyroid condition that predates the cancer.</p>
<p>So, the fact that it’s back to normal is encouraging. Since the cancer blood marker test is not a good marker for those on Doxil initially (if anything, it spikes for 50% of the women even when the treatment is working), I can’t use that as a way to get a “peek” at treatment efficacy or lack thereof. (mine spiked 300% after the initial Doxil treatment, and though I knew intellectually all about this spike phenomenon, viscerally, I felt like somebody hit me with a brick when I saw that number - this is where the intellect disconnects from the emotion).</p>
<p>Between this and the abdominal/pelvic sensations that have improved vastly, I am hopeful. However, the scan scheduled 3 weeks down the road will give me a conclusive story on how I am doing. If indeed my hunch is right and the treatment is working, I will be beating the stats again with a wide margin, given the % of those labeled “platinum resistant” (which I am) who respond to the second line treatment is less than 20%.</p>
<p>If I am not right, I will have to eat my words, but then again, it will be the least of my problem, won’t it?</p>
<p>Sunrise, I am impressed with how fluent you are with the cancer drugs & treatments. It is fascinating how you have identified a potential correlation between your thyroid condition and the cancer. I hope your hunch is correct. Are the doctors listening to you? You have much to teach them.</p>
<p>The new protocols are amazing. Their prospects are amazing. The fact that you feel like sh#t is probably really good. I am with your posts step by step because I am a biology geek by training and by habit. GO Sunriseeast!</p>
<p>But I am still stuck on: are you eating? All of this effort requires fuel.</p>
<p>sunrise, that is fascinating information. I’m really impressed with the way you’re on top of your meds and symptoms. Take good care of yourself and, like mafool said, make sure you’re eating.</p>
<p>12mh18 wrote- “Are the doctors listening to you? You have much to teach them.”
My thoughts exactly! This thread needs to be read by the medical community.</p>
<p>actually, I like all the Memorial Sloan Kettering doctors. Because I am on a trial, I am there on a weekly basis. I have been seen by now 7-8 doctors in addition to my main doctor including those who came to me when I developed fever and chill as a reaction to the experimental immune drug.</p>
<p>They all seem to listen to their patients. When I explaining my sensations and hunches and what not, nobody pooh poohed it, and in some cases, acknowledged that I am making a valid point. When I requested the TSH hormone check even though that test was not called for or planned, they said “sure” rather than I rolling their eyes over thinking I am this know it all obnoxious patient. </p>
<p>Their care seems to be very thorough. Only if the waiting time can be somehow reduced…</p>
<p>Yesterday I was there all day long: the experimental drug shot plus 8 hour wait for research blood collection. Predictably within 5 hours, I developed chills and fever which went up to 104.</p>
<p>Funny thing is, I met another woman on the same trial. She has no side effects to the experimental drug. Here is 75 year old, frail lady who does not suffer from the side effects and I am brought down to my knees - me who is more robust and strong than most people I know… Go figure. I do hope that the extreme flu like symptoms from the immune drug is an indication that it’s working - after all, there are some scientific basis for that. Immune related intervention, like vaccines and what not, is supposed to create flu like symptoms.</p>
<p>Today, I am kaput - in a PJ and resting, and agonizing over my “eating” action items! I caught up with several episodes of Person of Interest. I like this drama a lot - both high tech (my field) and crime drama (which I enjoy most).</p>
<p>Sunriseeast, I hesitate to post this notion, because I certainly hope for the best for your fellow trial participant. But, knowing that the immune response can diminish with age, one could infer that one reason that you are flattened by the side effects and and she is not may be due to an increased response by your immune system.</p>
<p>Hoping for the best possible outcomes for both of you…</p>
<p>This weekend was very good for both my husband and me. He got to rest a bit finally after we came back from Israel (he went back to work the day after we got back - I went for the chemo infusion the very next day), and I had a chance to recover from my last experimental drug treatment on Thursday. This treatment (the experimental immunotherapy shot) was particularly rough on me. It takes five hours for the shot to create severe chills and high fever (104 degree) on alternating cycles, and I had to stay for 8 hours after the shot. Coming home in that state was no fun, and it took a couple of days for me to recover. But recover I did over the weekend – I think I will even resume my exercise regimen today. Luckily, I have no more research blood collection requirement, which is the reason why they had to keep me 8 hours after the shot is given, so from now on, it gets much easier. The moment I get the shot, I come home straight within 4-5 hours of window before I get really sick, and just hit the sack. I am also lucky that so far I have not developed any side effects to the main chemo drug (Doxil) after the second infusion. I would be more worried if had reacted to Doxil since chemo drug’s side effects are long lasting (even permanent sometimes), while the immunotherapy drug’s effects are transient with no cumulative adverse effects.</p>
<p>I do feel that the treatment is working. I do feel that this experimental drug is actually well worth the hassle. My abdominal/pelvic cancer-o-meter is registering hardly any signal (if there is, it’s very, very weak and very infrequent) – I consider this to be a very good sign, together with the fact that my TSH hormone level is way down back to normal. I have a very good sense for what my body does. I noticed that the treatment was working the first time around earlier this year within 3 weeks after the treatment started. I “sensed” that my cancer came back way before any tests and scans. It’s good to have this ability to detect what’s happening, but at the same time, it’s a curse too. When I get the “cancer sensation”, it’s disturbing – I feel like crawling out of my skin. Having the sensation of deadly tumors merrily multiplying and spreading is very unsettling. When it happens a few times an hour, it can drown all other thoughts…… It took a lot of concentration and focus for me to stay with the “normal” activities. But I am happy to report, I feel that I am going to be fine.</p>
<p>Another good sign is, my weight is coming down. No, it’s not that I am losing fat (OK, maybe but not that much). I gained about 11-12 pounds of water weight (both ascites - the fluid in the abdominal cavity and throughout the body) with this recurrence. When you start with 111-112 pounds on a 5’6’’ frame, this is a huge extra load to carry. I think I lost about 4-5 pounds of that water weight recently. Another good sign - movement in the right direction. </p>
<p>Last night, I had a dream – in fact a couple. This has been very rare since my diagnosis. For whatever reason, I hardly ever dream – or should I say, I hardly ever remember my dreams. If I do dream or remember the dream, it’s always been a dream where the ending leaves no closure. Like, I am searching for something, but can’t find it. Like, I am trying to go somewhere, but I can’t find a way to do it.</p>
<p>Last night, in one of the dreams I had, I lost precious jewel – actually two pieces – one more elaborately set than the other. I lost the first one (more elaborately set piece), but somehow I found it. Then again I lost the other one (less elaborately set one), but I found that too. Both pieces were rubies – red stones. It does not take a Freudian psychoanalyst to guess what these two pieces of jewels mean. Recovering the first piece is my remission the first time around – much more elaborate affair – with a major surgery, a huge tumor load to handle, etc. I did get into remission, didn’t I? Recovering the second piece, less elaborately set piece, signifies getting my health back second time around. The second treatment is much rougher than the first, but without the fanfare and a novelty value of the first time cancer patient status on my part – hence less elaborately set jewel. </p>
<p>This is about the first dream I had since my diagnosis where the ending was good, that there was a closure, and I found/got what I lost/wanted.</p>
<p>A shaman may say this is a sign of things to come (wouldn’t that be nice), but being a rational skeptic that I am, I would say, this dream reflects what I am feeling – that is, I “THINK” I am getting better.</p>
<p>Well, the proof is in the pudding. I will see what’s going on in a scan scheduled in a little over two weeks. </p>
<p>Over the weekend, I told my husband to hold off on any plan he had to upgrade his marriage with a 21 year blonde.</p>
<p>Over the weekend, I told my husband to hold off on any plan he had to upgrade his marriage with a 21 year blonde.</p>
<p>haha
Glad to hear you are feeling positive.</p>
<p>
Is this your fiery red-headed demon speaking? I don’t think she will have much competition from a 21-year old blonde. :D</p>
<p>I believe in dreams too. They tell us things that our conscious mind often overlooks.</p>
<p>sunrise, I am so happy that things are going so well and I agree that all the signs (cancer-meter, dreams, response and lack of response to the two drugs) are good. Unfortunately, I have to agree with mafool about your older compatriot. Older people do not respond well even to normal vaccines because of weakened immune systems. Her lack of response to the experimental drug does not seem to bode well.</p>
<p>The story about the Israeli venture capitalist is fascinating! Israeli scientists and small companies are in the forefront of my field, too. I agree that his approach sounds very promising, and I am glad you have this offer in your pocket to consider if a time comes when it seems to make sense.</p>
<p>Speaking of using the body’s defenses, there is an eminent cancer specialist who is working on using a feature of cancer biology against tumors. One way that tumors invade surrounding tissue is to subtly alter the pH in their vicinity to make it more favorable to them. Tumor cells thrive in a slightly more acidic environment than do normal cells. This man is looking into fighting cancer with baking soda. He is funded by NIH to do this.</p>
<p>Sunrise - Wish you all the best with this trial - could the elderly person be part of the control group and that’s why no side effects?</p>
<p>amada,</p>
<p>thanksk for the kind thoughts. This trial is a phase I trial: no control group. everybody gets the treatment.</p>
<p>by the way, in the recurrence prevention trial that I flunked out of, I got the cancer vaccine - immune system related treatment. I was supposed to have similar side effects (flu like symptoms). I had none. I recurred (the prevention failed). So, this is why I am actually elated that I have all these severe flu like symptoms as a side effect to the immunotherapy drug on this trial. Of course, unscientific conjecture. Just my hunch.</p>
<p>Best to you Sunrise. Thanks for sharing both your cancer info and your perspective. It is a privilege to hear both. I am a big fan of your hunch.</p>
<p>^^^ Me, too. I think of you every day, sunrise - keep that good news coming.</p>
<p>As I mentioned in my earlier post, this second round of treatment has not been easy. However, deep down, I know that I can not put all the “blame” of having a difficult time on the harsh treatment alone. I must admit a good portion is my own doing. No, I am not going into the self flagellation mode as a certified masochist. Rather, I believe it’s an objective, should I say, detached, assessment made when I had a chance to sit back and review the situation. </p>
<p>I made this round more difficult by refusing all offers of help and assistance made by caring friends. I made it rougher than necessary by insisting that my husband sticks to the original plan made before my recurrence was confirmed – the plan to leave to Israel 10 days before I would for his nephew’s wedding. The original plan was, he could go there earlier, work in Tel Aviv office of his company and in the evening meeting with his friends and spend more time with his family. I would join him ten days later because our younger son’s first break from his college was coming up and I wanted to pick him up from his school and made sure that he does not come home to an empty house. By the time my husband needed to commit his departure date, the treatment has already started, and we knew how severely I would react. Yet, I literally pushed him out of the door and made sure he kept the original itinerary. </p>
<p>When the next treatment day came with him already gone, I had several offers from caring friends to accompany me to Memorial Sloan Kettering and drive me back home. I refused all that too. It was a very difficult long evening for me to come home to NJ in subways and trains. Next two days, I holed up at home, just bent out of shape, and refused to respond to offers of help or call for help.</p>
<p>Looking back, this whole story sounds like a comedy, if not for the fact that it is also pathetic and painful. Why did I actively create this scenario? Certainly not to score points on any competition to prove my mettle. My caring friends who offered to help would have been happy to be of assistance when I am going through a difficult time. My husband would have worried less. In short, there was nothing to be gained by such stubbornness. No winners here. I was much more amenable to receive help with grace during my first treatment when things were so much easier on me. It absolutely makes no sense that I would refuse all help when I really needed it more than any other time.</p>
<p>Except it does! In a very perverse way. I am an addict. An addict who was rehabilitated through careful intervention. An addict who relapsed under extreme stress. The drug of my choice, my comfort food, is this veneer of self reliance and self sufficiency, however brittle, fragile, and illusive it may be. </p>
<p>The recurrence of my cancer was, and still is, very rough on me, not just physically, but primarily on an emotional level. Ninety percent of my optimistic outlook and hopeful confident demeanor is genuine. But deep down, I am shaken to the core, much more so than when I initially got a very advanced stage cancer diagnosis. Back then, I had the sense that what happened to me was a fluke – something that I could overcome with my customary discipline, fortitude, and determination. When I got into remission against odds, I felt vindicated. I genuinely believed that with everything I was doing with such gusto in all areas of cancer management – nutrition, exercise, supplements, strong emotional foundation and positive outlook , and a clinical trial to boot to prevent recurrence – I would emerge as an extreme statistical outlier and achieve a long term remission. Instead, I found myself in mere 3-4 months on the wrong side of the statistical curve. I have done everything within my power to be the model patient. There is nothing more left under my control that I can do to affect the outcome. I have no arrows left in my quiver and the battle has only just begun. </p>
<p>They used the gold standard of cancer treatment for my condition as a front line therapy earlier this year. When I recurred so soon, that treatment was no longer considered “workable” for me. Now, I am on second line of defense. What if this does not work? My remaining options would start to diminish rapidly. The odds of second line therapy working for those like me are about 20%. If this treatment fails, the odds for survival are measure in weeks (60 weeks median) not in years. I feel like a student who flunked out of a critical course and was given the opportunity to take a makeup exam. What if I fail again? Are they going to expel me? Actually I felt more like a general leading a war. The front line of defense consisting of the elite of the elite forces crumbled. Now I am deploying my very best reserve force. If this line falls, I am left with untrained peasant recruits from remote villages who see being a solider as an escape hatch from the life of serfdom and wide eyed college kids pumped full of romantic fantasies of dying for a patriotic cause. With this motley crew, what are my odds?</p>
<p>Behind the cheerful and upbeat demeanor, in the dark recesses of my mind, I was afraid. I was fearful. And, I relapsed. I reverted back to my old habit of addiction. I went to the shooting alley and got pumped full of the drug of my choice with wild abandon. The more afraid I became and the more vulnerable I felt, the more desperately I clung to this illusion of self reliance and self sufficiency. Like a wild animal, when hurt, I go to the deepest lair of my den, and hide. My instinct tells me that last thing I need is to expose myself in times of weakness. This is a hard addiction to break. </p>
<p>So what now? The fact that I am articulating this is not an indication that I am breaking free of my addiction. I am open about this now because I am convinced that the treatment is working and the odds are very good that I will get into remission this round also. I can crawl out of it when I no longer feel threatened and vulnerable. But what happens when the next crisis unfolds? Will I go back to my shooting alley? At least, now that I have identified the nature of addiction, I will be very aware of what I am doing and why. That does not mean that I will be “cured”. Awareness is a necessary condition for change, but not a sufficient one. This is something I will need to explore methodically. </p>
<p>If I manage to “cure” myself of this malady, all of you whose contact information I have, be aware. Expect 3 AM phone calls with instructions for action items you need to do and errands you should run for me!</p>
<p>sunrise, once again I’m moved by the power and beauty of your writing. Ignore this if it isn’t helpful, of course, but it seems to me that one of the most important resources you have in your battle is your energy. Does it make sense to expend it, for example, taking subways and buses home after a very long and rigorous day, or would it make more sense to allow one of your good friends (who is dying to do something concrete to help you) to use his/her energy to accompany you and drive you home in comfort? Making things hard on yourself seems to me a bad strategy!</p>
<p>Sunrise…reading your post, I thought, “It’s like she was in denial.” Which is a very normal and human response. It’s good that you are so analytical–you know what you did last time and I trust next time you will make those 3 a.m. phone calls!</p>
<p>Blessings! Luck! Health!</p>