<p>Here is another piece of advice from a close friend. He has been in remission from non-Hodgkin’s lymphoma for about 7 years. Once he saw specialists, and got a good treatment plan, he opted to get his treatments done locally. This allowed him to drive himself, be independant, and not take any extra time and stress out of his day. When he required chemo, he would get very tired. He took his treatments on Thursdays (latest appt. possible). He did not work the following Friday, slept all weekend, but was good to go on Monday mornings. This worked out very well with work, and home life. He was told to look at his cancer as a chronic condition, and treat as needed. He has been healthy for 7 years.</p>
<h2>“But I might go get it cut so it’s not leaving such a mess everywhere…now, that’s a hilarious use of funds - pay someone to cut hair that’s going to fall out anyway. LOL.”</h2>
<p>No kidding LTS! LOL! My good friend with BC refused to pay…she crawled on to the family hair cut stool and had her husband go at it. After a few of his ‘stylings’, she finally told him to get our their son’s clippers.</p>
<p>Btw…some of the synthetics ARE really weird feeling…but there are good ones. There’s a little shop near Town and Country here in Houston that specializes in wigs for chemo patients. Mom found a synthetic that was so close to own her hair it was uncanny…it even had highlights and roots. She had to order it…kind of a custom job. (Then she got a little crazy and bought a really sexy light blonde page boy…and her best friend who was along for the shopping trip bought matching sympathy wigs…lol! And then they went prissing around the Galleria looking like twins. I have pictures…hehehe!) But the synthetics aren’t nearly as expensive as your human hair wig, so you can always add a one later if needed or… if you feel the need to be a little crazy. ;). </p>
<p>Regarding the state of our health care system. It is terrible isn’t it? My staunchly Republican mother said it was enough to make her consider Hillary.</p>
<p>countingdown - I just read your posts! I’m sending you my prayers too. What you describe…switching from disease research to treatment/meds research and online support groups is exactly what my mom did. It was more empowering and as I said…let her compartmentalize what she was going through. Like she said…‘I have cancer, and I don’t know what’s gonna happen to me…but I also have a life to live’.</p>
<p>“And being a scientist developing cancer drugs, I think I know exactly which treatment has cured your friend. I can attest that there is an entire generation of new cancer drugs and there are indeed amazing. I hope theyll bring at least a little more justice to this world.”</p>
<p>Absolutely. And working in public health for much of the past two decades, as well as working with my wife as she went through her ordeal, I can attest that most American insurance plans won’t cover drugs that have long since gone past the experimental stage, and are the standard of care of elsewhere.</p>
<p>LTS, I’m glad you are getting a second opinion. My husband is a 4 and a half year prostate cancer survivor. We were told from the beginning of his (unusually grave) diagnosis to travel to a major cancer center. The first months were the most stressful time of our lives. We were running crazy trying to do everything. We chose Memorial Sloan Kettering in NYC. You sound like you are coping unbelievably well with all of this. My hat is off to you and your support system. We have also been helped by the power of prayer. In fact I believe it is a major factor in why H is doing so well. You can PM me for more details on that. Meanwhile, stay well and God Bless you and keep you during this stressful time.</p>
<p>LTS- my sister after visiting a major cancer center was offered a place in a new drug trial. With the trial she ran the risk of getting the placebo or the drug. She had been given about 5 months to live. She was not willing to run the risk of not putting up a fight. She convinced her local oncologist to prescribe the drug that they were using in the trial. She was extremely lucky that she had an excellent insurance plan that allowed for experimental meds. She said many people were shocked that she was willing to try an unknown treatment. She laughed with a 5 month window what do I have to lose. She continued to work and she felt that helped her, it gave her some place else to focus her energy.
As I mentioned earlier that was almost 18 yrs ago. Through the Cancer Foundation in her town she is often asked to speak to others who are recently diagnosed with her type of cancer.
Good luck to you</p>
<p>LTS:
A good friend of mine was Dx with melanoma in 1995, had treatment and all was well until it recurred in fall 2001. It did not look good at all, his prior treatment had not been on the agressive side and all research was showing that the old agressie treatment was much better than the less agressive treatment.</p>
<p>In 2002-3 he was admitted to an LA based clinical trial, then dismissed later as his cancer had spread too far for their trial. He next went to a SF based trial, was dismissed from that one, for spreading cancer; then got into a Seattle based trial. I do not recall how things ended up with the trials, but here it is 6 years later and he is still living life large, when he was ready to make his final arrangements, per the docs!</p>
<p>mini, I am not sure what are you trying to achieve, but if youd like to attack me for doing my work you should start a new thread. I stand by my words: if one day the new drugs will safe lives of LTS or your wife or my own, our world will become a better place. Of course, you are entitled to your own opinion…</p>
<p>btm, I don’t think mini meant to attack you, but only to express frustration that the wonderful new cancer drugs you and others are developing are not available to many who need them. </p>
<p>I have some knowledge of one of these drugs, Gleevec. It works against a particular type of gastrointenstinal cancer, and it was originally tested on patients who were riddled with tumors, weeks from death. In many of these people, the cancers disappeared completely. It does not work for everyone, it does not work for anyone forever, and it is horribly expensive, but it is really miraculous that some end-stage cancer patients can be given a few more years of life.</p>
<p>It is awful that these new drugs are not available to everyone who could benefit.</p>
<p>LTS, I can see why you are so successful in your work. Although your world has been turned upside down, and you are faced with a major crisis, your mind is still in top form, observing and analyzing the system that you are now compelled to deal with. I imagine that you are itching to fix it, and that it would not take you very long to figure out how!</p>
<p>btm, I may have read it wrong but I interpret mini’s response different - I read it that he is in agreement with you but that he believes it’s hard to get some of those newer drugs in the U.S.; other countries allow them. </p>
<p>mmom and mom60 and somemom, thank you for posting that, it helps. </p>
<p>I am starting to realize how and why some people are motivated to stand up in front of audiences and declare that being diagnosed with cancer ended up being a blessing, and a positive event in their lives. It certainly does have a way a forcing a re-sorting or reordering of priorities. You really do discover in subsecond speed what is really important, and what matters. And your perspective on everything changes. Everything good you tend to suddenly appreciate very deeply; everything negative you jettison quickly and with no regrets. Decisions take seconds, not the more typical weeks, months, years. It’s actually rather liberating in many ways. How very odd - I was not expecting this and certainly could not have predicted this. It’s as if the higher power said to me something like this: “I’m going to throw something really, really horrible, scary, bad directly at you. It’s worse than anything you can imagine and it’s a huge, huge horror, worse than the most terrifying nightmare you can imagine. But I’m also going to leave you with some weapons and some tools - just enough so that you can fight back. And if you fight back strategically and leverage your resources you might even win, or perhaps at least not lose. And along the way, you’re going to discover some simply wonderful things, fascinating people and awesome resources, and hard as it is to believe right now, if you play this right, this can be one of the most interesting, productive, happiest and rewarding times of your life.” That’s how it seems to me, anyway. It’s a mixture of simply tremendous opportunity and potential for incredible joy, if I can just manage the challenge.</p>
<p>But the health care machine has just got to be fixed. I wish I could think of how to launch that mother of all wars that needs to happen. When I was in the hospital, I more or less refused to stay in my room unless I knew I was scheduled for radiation or chemo or meds or that the doctors were coming. I wore my own clothes, told the nurses where to find me or call my cell if they needed me or a doctor needed me, and I spend lots of time sitting just outside the main entrance, watching all of the people come and go. I saw some incredible sights. Elderly people who could not walk or even speak being cared for by minimum wage level help. One woman who refused a wheelchair, tried to walk and then I had to run to help catch her when her home health care worker wasn’t strong enough to hold onto her. (No heavy lifting following the liver biopsy, whoops.) People who just couldn’t help themselves in any way at all, and no one else was really helping them either. And it was easy - and scary - to differentiate those who had money and resources and those who did not. Very, very scary. At least, I can go see clients, buy wigs, get on planes, make phone calls, and even type on CC. So many cannot and there is no one to help them. There just has to be some answer or a lot of different answers to this, and some way to fix it. This just cannot be how we allow our citizens to be treated.</p>
<p>NYMomof2 there is no silver bullet for this, that’s for sure. When I think of the flexibility I have - I can go anywhere I want, give me five minutes notice - I do not have to ask anyone for a day off or for sick leave. I am not constrained by my insurance policies - I can decide, right now, to throw a lot of money at my cancer - the only problem I’m having is trying to get to the data points that will tell me where to throw money. I don’t have to consider anyone’s opinion but my own, and, I can work, drive, breathe, eat, shop, go work out, travel, think - I’m not even on any medication of any kind, since my oncologist let me off of the steroids, so I’m in a pretty good place all things considered. </p>
<p>Yet, even with all of these advantages and for the blessing of being well enough to function, the system is challenging me. Just getting the paperwork, the documents, and getting things moving to get a second opinion appointment has been more work and time than it should require, in my opinion. And even after my best possible efforts and four solid business days of working on it I still do not have a confirmed appointment at my second opinion choice, since I didn’t accept the one offered for Monday, for fear of risking the scheduled chemo on Tuesday morning. So what happens to people who do not have such advantages? What happens to the average middle class person? And then what happens to the socially and economically disadvantaged, and the elderly? Whatever the answer, it cannot be good. Why are we allowing it? There has to be some way to fix this…</p>
<p>Dear LTS,
Just found your thread, and am sending good thoughts and prayers your way. It strikes me that you do things with strength, intelligence, humor and style, and that’s exactly the way you’re coming through this. I admire your strength tremendously.</p>
<p>Remember Lance Armstrong? ~3% chance to survival, went onto win a record 7 tours. Even in the bleakest of situations, there is SOME hope.</p>
<p>Thinking of you and praying!</p>
<p>So strong for yourself and your daughter, so remarkably concerned for others at such an excruciating time.</p>
<p>Nymomof2 – I am on Gleevec! I was dx’d one year almost to the day that it first received FDA approval. I am convinced that one day Brian Druker (who developed it) will win a Nobel Prize. His work has stimulated a lot of research into more cancer “silver bullets.”</p>
<p>Interestingly, when I was first diagnosed and I went on Interferon, some of the most useful sites for blood diseases, dealing with Interferon and learning to understand test results were HIV/AIDS awareness groups. Their self-advocacy and self-education efforts have paid benefits far beyond their intended scope.</p>
<p>LTS… I am one of those who thinks cancer was a blessing in disguise. It certainly forced me to sort out what is most important in my life. And I will confess, I am one of those who got up and talked about the silver lining (actually, I used a fabric analogy; since I left the pension business I am now a Judaic fabric artist) – at my adult Bat Mitzvah, which was about three years post-dx, and after celebrating both of my sons’ Bar Mitzvahs.</p>
<p>Thanks to the folks who have offered good wishes – I am doing well, and it is wonderful to see the outpouring of support for LTS.</p>
<p>LTS, since you like data:</p>
<p>It’s truly encouraging, as you contemplate the need for change in the medical system, that you only posted this first on September 28.</p>
<p>And in these 7 days, there were 8916 viewings of this thread and more than 200 evidences of active participation (postings). </p>
<p>Who can tell which people you’ve influenced in their thinking, where they work, who they know, how it will influence their actions now and in the future. Throw one pebble into the water and there are so many ripples.</p>
<p>My apology to mini if I misunderstood him. I do agree that these drugs are expensive, just like hospital care, state-of-the art imaging technology, new sophisticated tests etc (actually, many of them are not available in Europe). However, I am under impression that as soon as the drug is approved by FDA in the US, it can be obtained by prescription, albeit some insurance plans may not cover its costs. Unfortunately, I am not in the business of pricing or selling these drugs just developing them. I do think that the costs will come down eventually just like it happened with anti-AIDS cocktails. The good news is that some of these new medicines (those ones that are taken orally as opposed to being injected) are small chemical compounds, so they are much easier and less expensive to synthesize and control rather then antibodies or other proteins that must be expressed, purified and formulated. So, as soon as patents expire, generic substitutes should become available.</p>
<p>The cost of my chemotherapy drugs for the three days next week = $20,000. Perhaps it is the price tag and not the chemical that is making chunks of my hair fall out. </p>
<p>I ran a rough estimate of the cost to fight this and win, assuming few complications or surprises, I get to about $550,000.00, most of that in drugs.</p>
<p>I spoke to a woman at the Lance Armstrong Foundation yesterday and shared with her some of the things I had overheard from other people in the hospital, where their insurance company would not approve this or that, or, people living in terror that they cannot get this or that treatment, and even some people who cannot afford their copays, and, she basically said, well, we can and DO fight cancer, and we win, but, we cannot fight the insurance companies. They are simply too big and too powerful. She said there’s a bill pending now to try to do this and another bill to try to do that and yet another one to try to do something else, but, even if these bills are passed the insurance companies will find some way around it. They are just simply too big. </p>
<p>So I said to her, well, the answer cannot be to just give up, they’re too big. She said but it is. There’s no way. So I said, well, what do people do who cannot afford their copays? Or scarier still those who do not have insurance at all? She said that one could of course go to some country where there is socialized medicine, but then the quality of care drops, and, if a person presents with a poor prognosis perhaps they do not get treated at all.</p>
<p>There are some programs available for the very poor she said but for the average middle class worker there is simply nothing available. So I asked her what is LAF doing, she said basically, nothing they can do. The American Cancer Society has a strong advocacy group but…</p>
<p>
Geez, LTS… are you about to become a {{shudder}} universal health-care advocating Democrat? (I can just imagine you on that boat to Cuba with Michael Moore…)</p>