Are you currently (or have you been) in a Clinical Trial?
Comments
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Susan I am so very saddened to read you post. Of course I hope that you can be made comfortable or even better that some amazing treatment will suddenly appear.
Regarding End of Life only you can make that decision. Here in the U.K. it is sadly not an option however I would drag myself to Switzerland and give myself the dignity that I would give my pets if I felt the time was right.
Thinking of you and hoping that whatever happens you know how much we care about you on these boards and how much we appreciate all the information that you have so generously shared.
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Dear Susan, we are terribly sorry to hear of your progression. You are in our thoughts.
The Mods
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Dear Susan,
I am so sad to read your update. You've been such a leader on this thread and I admire how you and your health team have been able to find new solutions.
I hope your palliative team will be able to help you be comfortable and help you with your questions.
Several of my friends with MBC here in Canada have chosen medical assistance in dying over recent years (yes, we call it MAID). It's a personal choice they made once it was clear that further treatments wouldn't work and their pain was devastating. My sister (also a Susan) died of MBC 5 years ago, but didn't choose assistance in dying. However, her palliative team was able to keep her comfortable in hospice - and she had let her husband understand her wishes of no interventions. I don't know what I will choose, although I know I hope to go to hospice rather than die at home.
One of my friends had consulted a death doula - which sounds stark, but I believe she appreciated their help.
Thinking of you and your family.
Heather
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Susan, I am so sorry to read this update. You always inspired me to have less fear about my own brain mets by how you handled you symptoms after whole brain radiation. I am in your pocket, I will continue to follow this thread to check on you and sending my support your way as you did for me without even knowing it.
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Hi Susan - My thoughts are with you during this challenging time. I agree with others. You have been an inspiration to more people than you know. Truly. Thank you for all that you have shared.
Because you have been at the forefront of exploring all options, I'm curious if you or your doctors ever explored Travera (https://www.travera.com/)? It might be a hail mary, but they supposedly can get results after 2 days from malignant fluids and might be able to evaluate/re-evaluate some reasonable options. If you decide not to invoke your end of life option, maybe perhaps they could find something that helps to ease symptoms.
My prayers are with you. I hope you can get all the love and support you need with whatever decisions you have to make. Many many hugs.
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Dear Susan,
I am sending you healing and comforting thoughts. I don't write often but I read the boards regularly and have admired your grace, tenacity, and honesty throughout this journey. The video of you and Ann gave me hope and helped anchor me during the early months of my diagnosis. Thank you for the time and information you've shared with us.
Perhaps another option will come up, but no matter what, know that we care about you. Wishing you comfort and peace of mind.0 -
hi Susan,
I’m sorry this is happening to you. I live in Oregon and have death-with-dignity drugs, so would encourage you to pursue those. I also had the symptoms you describe twice since becoming metastatic, when the treatments I was on failed. I got very close to death. I was lucky and a new treatment kicked in both times. I understand that that is unlikely for you at this point (and increasingly unlikely for me also next time I get to that stage). I used to have a short list of last-ditch alternative treatments, but I lost that list. Melatoninwas on it. I think there’s evidence (if from other cancer types) that high-dose melatonin can reduce some unpleasant symptoms like shortness of breath and sleep disturbances. I’ll probably start taking it again at some point. Bulk Supplements sells it without filler. I believe sublingual is best absorbed (though bitter).
Here’s a link to its use in lung cancer, where it improved dyspnea and sleep quality:
https://www.tandfonline.com/doi/full/10.1080/09291016.2021.1899485
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Dear Susan,
No words, just hope that Hope has something, many things, to really help you out at this point. Thank you for all your guidance and insight into dealing with this hot mess of a diagnosis, and showing us all how to cope when coping truly seems not possible. Hoping things take a turn for the better today...
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Susan, I'm so sorry things have reached this point. As others have said, you have been an inspiration to so many with your courage, pragmatism and determination. We've all learned so much with you leading the way, learning of the possibilities with clinical trials, never giving up hope.
Rest well my friend. I wish you peace and comfort in the time that remains. Embracing you in gentle healing hugs.
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Susan - I would echo Cure-ious, there are no words that feel adequate here. You have been a source of hope and information on this thread and others. You've demonstrated how to fight for every option and I'm grateful for your example. I am in hopes still for a miracle for you and that your palliative team has the means to make you as comfortable and pain free as possible as you adjust to being home.
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Thanks for all of your kind words! You have all supported and inspired me over the years and I am sincerely grateful. I have lived a wonderful life so I have no regrets. My husband started a short blog. I you want to follow my journey, please write to him at csh@stanfordalumni.org.
See you on the other side.
Hugs, Susan
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Susan, I am impressed by your strength and determination. I hope that palliative care is able to provide you with many pain free or low pain day shrad do you can enjoy your days ahead g. Thank you for Al the help you provided to others here
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Susan, thinking of you with love and hope- I hope you are surrounded by all your family and can be comfortable- happy you are out of the hospital and home now.
I will read your husband's blog and virtually hold your hand- you have enriched many lives.
So many hugs
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Susan - I hope Your Palliative team can help reduce your symptoms. You have been such agreat source of encouragement and information on these boards. Thank you for all you have shared.
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Dear Susan, I haven't written much over the years but I have have avidly followed several threads and feel such gratitude to you and others who have so generously and fearlessly shared your experience, knowledge, hopes and disappointments. I have learned so much about this horrific disease as well as how to face it with grace and fortitude. I wish you comfort, peace, joy and love in your days remaining and beyond. You will remain in my thoughts.
Margarita
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My Chinese Traditional Medicine doctor and my Mom want me to try Ozone therapy. I wonder if anyone has tried or even heard of this.
Definitely out of my wheelhouse and have lots of questions for the guy who does it.
Palliative care has helped my symptoms a lot, particularly low-dose morphine and supplemental oxygen. Still problematic that our shower is a floor and a half up some really steep stairs. I haven't had a shower in two weeks, relying on body wipes. I usually shower every night so feel pretty gross.
Hugs, Susan
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Going to keep posting here to help everyone to best know how getting to the end might look. I thought I had prepared as well as I could, but there's so much to do regarding signing all the right forms, getting the right home equipment, and support etc. So go ahead and ask questions if you have any.
If I should post on a different thread, let me know.
Hugs, Susan
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are you strong enough to go up and down the stairs while sitting, one step at a time, on your butt? Worked for me. Also, they make oxygen cannulas with very long tubes that allow you to be tethered to your oxygen while in another floor. They are green. I had to request ine
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Have you considered renting a portable oxygen concentrator so that you can go beyond the reach of your tube?
While my issue was progressive radiation induced pulmonary fibrosis rather than mbc I researched Chinese O3T (IV, injection) and hyperbaric oxygen therapy which I chose but not might be suitable for your situation since I had to be in the big tank without O2 for 45 minutes. Both of these show some effectiveness against the out-of-control inflammation which is the driving force of the progressive scarring. Research has shown that while direct O3 damages the lung, O3 administered via the bloodstream breaks down and improves the regulation of the immune system. I haven't seen any research that has shown a direct anti-neoplastic effect but better immunity might help. My pulmonologist had no idea whether or not it would be useful but did not think it would be harmful. I don't know if it was the prednisone, HBOT, Japanese antiradiation acupuncture treatment developed after WW2 or good luck that stopped the RIPF before it got to my left lung. Here is a link to a study on how Chinese ozone therapy affected people with idiopathic pulmonary fibrosis.
https://journals.plos.org/plosone/article?id=10.1371/journal.pone.0272047
Hope this helps.
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Susan, the idea of the ozone therapy should be sound to complement your other treatments of SE etc. I know it can boost the immune system and possibly making other cancer treatments more effective. It can also increase vitality which is important.
As far as stuff to have, a shower chair if you shower would be good and one of those chair lifts for the stairs would probably be in order. Gives you access to the upper level and allows you to shower or possibly sleep in your own bed, safer. Not sure whether you want to invest in that just a thought, otherwise, if you have any care providers coming or family with you, perhaps you can at least get a bath from water in buckets which is better than wipes. Just a thought. Still in your pocket right now sending supporting thoughts your way.
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i have a portable as well as a stationary oxygen concentrator, and the portable is still too unwieldy and heavy when I’m really sick, so I found the 60ft tube connected to the stationary one much easier. Also, the battery in the portable would sometimes run out while I was downstairs. That’s why I recommended the tubing
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SusaninSF, it's SF-Cakes (San Francisco Cakes, aka Stephanie), I am thinking of you and want to join in the chorus of gratitude for all your posts here. My husband recently passed (from another type of cancer), and the in-home hospice support he received helped him to bathe both in the shower as well as gave him really good sponge baths in bed, using big absorbent pads underneath him and lots of soap and water. They washed his hair in bed, too. It was really a blessing, as he hated having dirty hair. Nothing beats a good shower, but it was a surprisingly effective alternative. I hope you are getting all the support you need. Love to you.
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Luce is right, the portable is not as good as the regular O2 tube since they weigh 2.8 - 5 lbs and are pulse rather than continuous flow. However, a 60 ft tube could not get me to the shower so my husband carried the portable for me as I navigated the stairs on my bottom. When visiting the doctor I wheeled it in a fabric shopping cart until I could tether to a real tank at the pulmonologist's office. It is not a substitute for the stationary installation but it helped.
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Just recalled that someone in a PF group mentioned an affordable, low-tech and low exertion way to bathe. He used a plastic kiddie pool with a plastic chair in the middle while someone helped him in and "showered" him with buckets of water as well as a soaped facecloth. The cleanup involved the helper emptying the pool with a bucket and drying it up with a towel. I never tried it so this is just hearsay. Being clean is not an absolute necessity but it sure makes you feel so much better.
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Maybe the thread "A place to talk death & dying" would be more on target. Also, it would help folks who have immediate concerns that might not see the clinical trial thread. Susaninsf, as has been said many times, you help alot of us cope.
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Dearest Susan
Always inspiring your posts are global in reach
Much gratitude
Bright in hope.
Sydney Australia
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Thanks to everyone for the helpful tips! Now that I'm so light (last check 95 lbs) my husband was able to pick me up and carry me upstairs. My daughter was also there to help stabilize us. In the shower, I sat on the plastic commode chair and he used the hand-held shower nozzle. Felt so wonderful to be clean after two weeks! Will check out the other thread or maybe start a new one along the line of "Practical Advice About Home Hospice". Don't want to usurp space here for important clinical trial info.
Hugs, Susan
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Started a new thread here: https://community.breastcancer.org/forum/77/topics... for those who want to continue discussing Hospice.
Hugs, Susan
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Has anyone heard of the CrispR trial??? I cannot find much about it or where it is but hearing a lot on FB???
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Well, it could be the PACT pharma trial they are talking about, it was written up recently in Nature:
https://www.nature.com/articles/s41586-022-05531-1...
The trial included breast, lung and colon cancers: 11 patients had progression, 5 patients were stable, one (lung cancer) had some shrinkage, which for a small trial of CAR-T in solid tumors is promising. Here are some summary:
https://www.prnewswire.com/news-releases/pact-phar...
https://www.fiercebiotech.com/research/pact-pharma...
They say another phase one trial will follow sometime this year...
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