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Help Lark Lands Battle Cancer

$14,503 of $30,000 goal

Raised by 86 people in 10 months
Created August 17, 2017
Lark Lands Helped People with HIV in the  Worst Times- Now She  Needs Our Help to Battle Life-Threatening Cancer

Since the very earliest days of the AIDS epidemic—when she founded what was one of the very first support groups for living with HIV—Lark Lands has been a generous and caring expert resource. Through the support groups she taught people how to support their bodies with good nutrition and an integrated approach to health in the hope that this would help maintain the immune system and overall body health. The goals: to give people a chance to survive until effective drugs became available and, perhaps just as important, to give hope. Many of those support group members are alive today. And years later, clinical trials confirmed the value of her approach. She was also the first to observe that nutrient deficiencies were common and contributing to terrible symptoms like fatigue and diarrhea and neuropathy and countless others, for all of which she found combined approaches that helped.

She helped many thousands of people, both directly and through her lectures and writing. And that number more likely extends to millions worldwide -- many activists through the years contacted her to let her know how much her work had helped even in isolated villages in Africa and Asia.  For many years she traveled to give up to 40 speeches per year in 40 different cities in the U.S. and abroad, teaching people how to support their bodies while also updating them on antiretrovirals and treatments for opportunistic infections and wasting. Many people attribute their survival, or a significant share of it, to Lark’s expertise and guidance.

Sadly, Lark is now struggling with Stage 4 metastatic cancer that has spread to her lungs; it has no good treatment options; it came on rapidly and has worsened. She is now on oxygen full-time, unable to be off it for even a minute. But she remains cheerful. In an email to friends to tell them this on July 19, in typical Lark fashion, she wrote:

“Please know that, other than having to figure out everything I have to do to close things out and how I will find the energy to do so, I'm fine.  I am content with my life and the only thing that terrified me, finding a home with a loving person for my beloved cat Ali'i was taken care of a couple of days ago. So I will stick around as long as I can for this 21-year-old kitty who loves me so but now I know he will be well taken care of and I feel so happy and so relieved.”

Lark says some people don’t understand why she is taking such a terrible diagnosis so calmly.  But she notes that when it comes to death, she was “broken” long ago. Because of the thousands of friends she lost, Lark, like many of us, eventually quit grieving at all because “you can't grieve terribly eight times a week.” And she notes, “It appears that this applies when it's me, as well.” But that doesn’t mean Lark has given up. She added:

“The only thing I'm really interested in is oncolytic viruses to treat cancer.  The research is showing amazing results at top cancer research centers. People with other "incurable" cancers have been cured.  So there's always hope. She concluded her email to friends with “So sorry that I have to tell you this.  I know you love me and this will make you sad.  Just know that I'm fine, emotionally and mentally, if not physically.  Love you much. –Lark”

Lark has told everyone how lucky she is that two of her activist friends, George Carter and John Riley, followed up on her idea about oncolytic viruses and located a trial that looks very promising. The fact that she appears to qualify for it has given her great hope and—it appears—more energy to go through the struggles ahead. 

Lark is a very private person who was reluctant to allow us to establish this GoFundMe page, soliciting funds for her. But we argued that she had given the HIV community so much for so many years that she needed to now let us do something for her. 

And Lark needs our help. Most of what Lark did working with people living with HIV and with the AIDS orphans project she cofounded in South Africa was done on her own, without a salary and largely uncompensated through much of 30 years. As a result she has no savings or retirement fund or investments to cash in. She still works as a medical editor, basically living hand to mouth every month. Thus, she doesn’t have the financial resources to deal with what she is facing.

One of her most immediate needs is for a portable oxygen concentrator (POC) to replace the heavy oxygen tanks needed when away from home which don’t last long at the high level of oxygen she needs. And only the POC is allowed on planes so if she gets in the trial (halfway across the country!), she will have to have one. One that meets her needs will cost around $3,000-$3,500. The only oxygen supplier where she lives just told her that they could not provide a POC through Medicare (real reason: because the oxygen companies don’t make enough money on them!). So buying her own is urgently needed.

 All of us know that the costs—expected and unexpected—for battling a life-threatening condition are enormous and often overwhelming. Not to mention that none of the nutritional therapies she uses are covered by Medicare. And if she is admitted to the clinical trial she will incur significant travel and lodging costs for repeated trips there. Helping pay for all these expenses is why we started this GoFundMe, to raise funds first to pay for the portable oxygen concentrator, but also for other expenses that she has already incurred, and for others that are sure to arise.

 If you are able to donate, at any level, we would be grateful. Your thoughts, prayers, healing energy or whatever you have to offer are welcomed. Sean Strub recently wrote this to Lark: “Perhaps most important, your kindness, patience and hope were always infectious…No matter how dire the situation, no matter how few options seemed available, you always gave me and others hope, and a science-based strategy that kept many people going when they might have otherwise given up.”

 Let’s give hope, and funds to support it, back to this hero who gave so much for so long.

 

Fred Blair, acupuncturist, Blue Lotus Acupuncture NYC

George M. Carter, Founder & Director, Foundation for Integrative AIDS Research (FIAR)

Gregg Cassin, Cofounder, AIDS, Medicine & Miracles
Mary Caston, Counselor, Colorado AIDS Project & Monterey County AIDS Project; Board of Directors, AIDS Medicine & Miracles

JD Davids, Senior Editor and Director of Partnerships, TheBody.com/ TheBodyPRO.com

Michael Dorosh, Treatment Education Network, AIDS Treatment Activists Coalition (ATAC)
 
John James, Editor and Publisher, AIDS Treatment News

Gil Kudrin, Cofounder, Night Sweats & T Cells

Bob Lederer, former POZ editor, ACT UP/NY member, DAAIR board chair

Michael Mooney, Founder, DocMooney.com

John Riley, ACT UP/NY member, Out-FM radio producer

Fred Schaich, Founder, International Foundation for Alternative Research in AIDS 

Jane Shull, Executive Director, Philadelphia FIGHT

Sean Strub, Founder, POZ and Sero Project
 
Enid Vazquez, Associate Editor, Positively Aware

Nelson Vergel, Founder, Body Positive Wellness Center/Houston, Program For Wellness Restoration (PoWeR)

Fred Walters, Founder, Houston Buyers Club
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Hello Everyone

Your donation to help Lark was of great help to her. She is still getting stronger and had this great news to share:

"Dear Friends,
I wanted to let everyone know that I got my results of my CT scan after the first six rounds of chemo and it shows........
NOTHING! :):) No tumors, no fluids in lung/abdomen, nothing! I couldn't be any more delighted! I knew my miserable symptoms had resolved (all the things related to the ascites and wasting I previously had which I dragged myself back from) but I wanted to wait to say anything until I got the CT results since that's the real proof of what's going on. And lucky, lucky me, what's going on is remission.

They don't consider this aggressive type of stage 4 metastatic endometrial cancer curable but with the whole combo of what I'm doing it's at least held at bay for now. My goal has always been to do everything I could to buy time in hopes of eventually getting in an oncolytic virus trial that could be an actual cure (and I know that could be several years away). And for now, yes, indeedy, I've bought time! Yeehaw! The only slightly shake your head thing is that I initially hoped that the chemo would shrink my largest tumor enough to qualify me for the phase 1 oncolytic virus trial I had hoped to get in since it had an exclusion with tumors over a certain size. It's no longer enrolling so it doesn't matter but now the oncologist points out that I wouldn't qualify for it now because I don't have any measurable tumor. But that's a good problem to have! :):)

Unlike the decision that many women make to take a break from the chemo at this point, when this possibility was suggested to me my response was "No siree bobtail. I'll dance with the one what brung me." Of course, I had to translate this for the oncologist so for those, bless your hearts, who did not grow up in Texas that means "No way, no how. I will stick with what got me here." That combo was two chemo drugs (paclitaxel/Taxol and carboplatin), liposomal vitamin C, high dose cannabinoids (thank the heavens I live in Colorado), a whole long list of nutrient supplements, and excellent nutrition, along with as much exercise as I have been able to work myself back to. The only difference will be discontinuation of the neuropathy-causing Taxol. The oncologist feels it's safe to discontinue it in order to give the nerves the chance to recover (and yes, I'm doing the whole neuropathy protocol I put together back in the day for people living with HIV and am optimistic about that since many hundreds of people through the years told me that their neuropathy was completely eliminated by my protocol).

As you can well imagine, since I spent so many years working in the worlds of HIV and hep C I had a whole discussion with the oncologist about the risks of resistance and reduced efficacy doing a single agent vs the two-agent regimen. His response was that there's basically no data on that for this type of cancer but he says the data from ovarian and breast cancer seems to indicate that in this situation a single agent should be fine in those regards (numb fingers crossed).

The only problem with continuing the carboplatin is that I had a hypersensitivity reaction to it on the 6th chemo course. They wanted to rechallenge me so I spent 3 weeks researching this in depth, looking at all the published results; it's only a teensy bit risky since gee, a few people have died during the rechallenge. But they all seemed to have comorbidities I don't have so after much consideration I decided to go ahead. I did all kinds of anti-allergy meds in the 24 hours prior to the chemo and immediately before it. As they stair-stepped the rate of the infusion up, at about 3/4 of the way through it (at the highest rate they were going to attempt) I again had a hypersensitivity reaction but they stopped the infusion, pushed a bunch of Benadryl, and the symptoms resolved within 20 minutes or so. The nurses felt comfortable restarting (and in this situation you only trust the nurses!) so they then restarted at a slower rate and I finished the full dose. So that will be the plan from now on.

Alas, after one hypersensitivity reaction, much less two, there is always a risk of another one that could be much worse. But there are just no alternative agents for this type of cancer! And how crazy is it that with this cancer that is diagnosed in 55,000 American women yearly, way more than the number with ovarian (22,240) and cervical (13,240) combined, it gets no attention. Research is seriously underfunded ( https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3411479/) so it's no surprise that no new drug has been approved for it in a quarter of a century! If only AIDS activists were involved!!! Bet we'd have new drugs and tons of research money then!!!! In any case, I will press on with the carbo and hope it keeps working and I keep being able to tolerate it long-term!

Thank you all so much for your amazing support through this. You're the best! And I'm delighted to be able to say that I will still be here, being your friend, for the foreseeable future! Rock 'n Roll! Lark"
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This is an email I just got from Larks. Your donation really helped her. Happy Thanksgiving, everyone.

Dear sweet wonderful friends,
I know I have been out of touch and just wanted to send a joint email to everyone who so very sweetly helped set up the gofundme site (which helped me enormously during a time when I was not functional) to let everyone know that I am now doing much better. I have mostly reversed the malnutrition/dehydration I fell into when I first had ascites and that's made the chemo much more bearable. After round 3, it still makes me tired because it nukes my RBC and the hemoglobin is too low. You can be on all the oxygen in the world but if you don't have hemoglobin to transport it, no bueno. So the chemo fatigue is here but not the horrible weakness and inability to function I had the first two times. So, yay, this is bearable! And joy of joys, I am again able to drive and no longer have to ask others to take me places. I regained my freedom!!!!! And today's good news is that I went for an abdominal drain (paracentesis) yesterday because it had been more than three weeks since the previous one and they only drained a bit over half a liter when previously it had been multiple liters every week. So it looks like the chemo is working and drastically reducing the ascites which should mean it is also doing other good things. Huge good news!! So I am enjoying all these things. Much to be thankful for! All of y’all are other such things!!!!!!!!!!!!!!!!!!!!!!! When I count my blessings each of you will be among them. Thank you so much for everything you did and all your support. Love you all. Wishing you the happiest of Thanksgivings! Lark
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Lark has been deeply moved by your donation. Here is a note from her:
"Fully expressing the gratitude I feel for the people who have pitched in to help me at this difficult time feels impossible. So all I can say is that I thank you from the bottom of my heart. I am doing the best I can to keep going forward in the hope that I might ultimately be able to find healing through the oncolytic virus clinical trial or other therapies. The help that you and others have given me makes me feel like I have a community of people holding me up, giving me the kind of support that is invaluable when dealing with a life-threatening illness. "Thank you" isn't enough. But I do thank you. And will remember you always. With immense gratitude. Lark"
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$14,503 of $30,000 goal

Raised by 86 people in 10 months
Created August 17, 2017
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