Hi Merry. I am taking nothing for my illnesses. I am cancer free, for now, due for another CT Scan in November. As for the Guillain-Barre, the only lingering symptom is numbness on the bottom of my feet. I just don't think I ever mentally dealt with my trauma. Especially since I was completely alone at the hospital and the rehab, due to COVID restrictions. Out of the hospital, I spent 3 1/2 months on 120mg/day of Steroids, which drove me to compulsively spend $300,000 on jewelry auctions! I will take a look at the group. Thank you for posting.
I have been extremely depressed....
It’s very important to take care of your mental health along with the physical. Perhaps an anti-depressant might help you and some talk therapy. Try https://www.cancersupportcommunity.org/. Maybe they have some groups in your area. I’m in Phoenix and they have zoom meetings and other events to help cancer patients and their caregivers.
I’m stage 1B. Right upper lobe removed in April. Only taking Tagrisso, which is now considered the first line treatment for Stage 1, not chemo or immunotherapy.
@lynguist, I’m glad you are now cancer free, going through everything related to that is a huge accomplishment. You’ve come a long way. It sounds like you would benefit from reaching out to your therapist for help with processing the weight of what you’ve been through. It’s easy to get to a low point, it’s not uncommon. I hope you are able to get some help.
I don't need any additional treatment. My cancer was removed and, so far, all subsequent CT Scans are stable and negative. I have to deal with my mental health. I have not been coping well. Instead of doing things to help myself, I'm not exercising, eating as well as I used to, vaping medical marijuana for my RSD pain. I'm not handling life well. I attend both a Zoom Women's Group & an Eating Disorders Group weekly, but I stopped seeing my therapist privately. It's as if I don't care anymore.
@lynguist, I’m glad you are now cancer free, going through everything related to that is a huge accomplishment. You’ve come a long way. It sounds like you would benefit from reaching out to your therapist for help with processing the weight of what you’ve been through. It’s easy to get to a low point, it’s not uncommon. I hope you are able to get some help.
Hi Merry. I am taking nothing for my illnesses. I am cancer free, for now, due for another CT Scan in November. As for the Guillain-Barre, the only lingering symptom is numbness on the bottom of my feet. I just don't think I ever mentally dealt with my trauma. Especially since I was completely alone at the hospital and the rehab, due to COVID restrictions. Out of the hospital, I spent 3 1/2 months on 120mg/day of Steroids, which drove me to compulsively spend $300,000 on jewelry auctions! I will take a look at the group. Thank you for posting.
I have been extremely depressed....
I don't need any additional treatment. My cancer was removed and, so far, all subsequent CT Scans are stable and negative. I have to deal with my mental health. I have not been coping well. Instead of doing things to help myself, I'm not exercising, eating as well as I used to, vaping medical marijuana for my RSD pain. I'm not handling life well. I attend both a Zoom Women's Group & an Eating Disorders Group weekly, but I stopped seeing my therapist privately. It's as if I don't care anymore.
@lynguis- Welcome to Mayo Connect. That is a nightmare story that you have lived through. I can't believe all the drugs that you were given at once. What had they been thinking? Did you keep all of your labs, scans, and tests from that hospital? If you have, don't throw them out if you decide to take legal action against them.
I'm so sorry that you went through this horrible time. If if can ask, are you taking anything for your illnesses now?
Hi Merry. I am taking nothing for my illnesses. I am cancer free, for now, due for another CT Scan in November. As for the Guillain-Barre, the only lingering symptom is numbness on the bottom of my feet. I just don't think I ever mentally dealt with my trauma. Especially since I was completely alone at the hospital and the rehab, due to COVID restrictions. Out of the hospital, I spent 3 1/2 months on 120mg/day of Steroids, which drove me to compulsively spend $300,000 on jewelry auctions! I will take a look at the group. Thank you for posting.
I have been extremely depressed....
My mother & brother were both diagnosed w/lung ca, stage 1, so, due to heavy scarring in my lungs (thanks to my history of smoking, chronic bronchitis & pneumonias), I had yearly CT Scans, since 2012. I had nodules, which were being watched closely. In 2020, a small nodule became cancerous, in situ, stage 1. I had an upper-right lobectomy & theoretically needed no further treatment. My internist, however, felt that with my family history, I should start an Immunotherapy regimen, all Out-Of-Pocket. Optivo, Yervoy, Tecentric, Tarciva, et al. I was getting overdosed and feeling sicker weekly. They stopped the cancer drugs & just gave Vitamin C, crap like that. But I continued to worsen. One night I drove to the hospital because I was so agitated. They gave me saline & a Valium! The next night I was much worse & my friend took my to a different hospital, where I was diagnosed w/liver toxicity & Guillaum-Barre. That was 3 years ago. I have numbness in my feet, and I never take another Monoclonal Antibody EVER,
@lynguis- Welcome to Mayo Connect. That is a nightmare story that you have lived through. I can't believe all the drugs that you were given at once. What had they been thinking? Did you keep all of your labs, scans, and tests from that hospital? If you have, don't throw them out if you decide to take legal action against them.
I'm so sorry that you went through this horrible time. If if can ask, are you taking anything for your illnesses now?
My mother & brother were both diagnosed w/lung ca, stage 1, so, due to heavy scarring in my lungs (thanks to my history of smoking, chronic bronchitis & pneumonias), I had yearly CT Scans, since 2012. I had nodules, which were being watched closely. In 2020, a small nodule became cancerous, in situ, stage 1. I had an upper-right lobectomy & theoretically needed no further treatment. My internist, however, felt that with my family history, I should start an Immunotherapy regimen, all Out-Of-Pocket. Optivo, Yervoy, Tecentric, Tarciva, et al. I was getting overdosed and feeling sicker weekly. They stopped the cancer drugs & just gave Vitamin C, crap like that. But I continued to worsen. One night I drove to the hospital because I was so agitated. They gave me saline & a Valium! The next night I was much worse & my friend took my to a different hospital, where I was diagnosed w/liver toxicity & Guillaum-Barre. That was 3 years ago. I have numbness in my feet, and I never take another Monoclonal Antibody EVER,
I have n s c lung cancer stage 4, diagnosed September 2022. I was given keytruda with trial drug, then with standard treatments. It showed no benefit for me. However for a close relative with melanoma it did it’s work and he is now in remission.
There are just so many unknowns, that’s the difficult part of this journey.
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It’s very important to take care of your mental health along with the physical. Perhaps an anti-depressant might help you and some talk therapy. Try https://www.cancersupportcommunity.org/. Maybe they have some groups in your area. I’m in Phoenix and they have zoom meetings and other events to help cancer patients and their caregivers.
I’m stage 1B. Right upper lobe removed in April. Only taking Tagrisso, which is now considered the first line treatment for Stage 1, not chemo or immunotherapy.
Best of luck to you.
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3 ReactionsThank you for your wise advice. I am definitely going to restart individual therapy. I just have to find the right person.
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1 Reaction@lynguist, I’m glad you are now cancer free, going through everything related to that is a huge accomplishment. You’ve come a long way. It sounds like you would benefit from reaching out to your therapist for help with processing the weight of what you’ve been through. It’s easy to get to a low point, it’s not uncommon. I hope you are able to get some help.
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3 ReactionsI don't need any additional treatment. My cancer was removed and, so far, all subsequent CT Scans are stable and negative. I have to deal with my mental health. I have not been coping well. Instead of doing things to help myself, I'm not exercising, eating as well as I used to, vaping medical marijuana for my RSD pain. I'm not handling life well. I attend both a Zoom Women's Group & an Eating Disorders Group weekly, but I stopped seeing my therapist privately. It's as if I don't care anymore.
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1 ReactionHi @ehb999, I recently ran across this past post from another member, https://connect.mayoclinic.org/discussion/a-keytruda-patient-running-the-2022-chicago-marathon/. There are certainly risks associated with any treatment, including Keytruda, but it's been successful for many people too.
What did you decide? Have you started an additional treatment?
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1 ReactionHi Merry. I am taking nothing for my illnesses. I am cancer free, for now, due for another CT Scan in November. As for the Guillain-Barre, the only lingering symptom is numbness on the bottom of my feet. I just don't think I ever mentally dealt with my trauma. Especially since I was completely alone at the hospital and the rehab, due to COVID restrictions. Out of the hospital, I spent 3 1/2 months on 120mg/day of Steroids, which drove me to compulsively spend $300,000 on jewelry auctions! I will take a look at the group. Thank you for posting.
I have been extremely depressed....
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3 Reactions@lynguis- Welcome to Mayo Connect. That is a nightmare story that you have lived through. I can't believe all the drugs that you were given at once. What had they been thinking? Did you keep all of your labs, scans, and tests from that hospital? If you have, don't throw them out if you decide to take legal action against them.
I'm so sorry that you went through this horrible time. If if can ask, are you taking anything for your illnesses now?
Here is a group that you might want to take a look at:
https://connect.mayoclinic.org/discussion/gbs-guillian-barre-syndrome/?pg=2#comment-784468
How are you doing now?
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4 ReactionsMy mother & brother were both diagnosed w/lung ca, stage 1, so, due to heavy scarring in my lungs (thanks to my history of smoking, chronic bronchitis & pneumonias), I had yearly CT Scans, since 2012. I had nodules, which were being watched closely. In 2020, a small nodule became cancerous, in situ, stage 1. I had an upper-right lobectomy & theoretically needed no further treatment. My internist, however, felt that with my family history, I should start an Immunotherapy regimen, all Out-Of-Pocket. Optivo, Yervoy, Tecentric, Tarciva, et al. I was getting overdosed and feeling sicker weekly. They stopped the cancer drugs & just gave Vitamin C, crap like that. But I continued to worsen. One night I drove to the hospital because I was so agitated. They gave me saline & a Valium! The next night I was much worse & my friend took my to a different hospital, where I was diagnosed w/liver toxicity & Guillaum-Barre. That was 3 years ago. I have numbness in my feet, and I never take another Monoclonal Antibody EVER,
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4 ReactionsThank you
Ask the dr or look a the biopsy report.
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