Sallysh Posted January 8 Share Posted January 8 It’s been a while since I’ve posted. I have a squamous cell non-small cell lung cancer went through the original treatments got to the dervalumab and had two roundsit. The cancer began progressing so we changed from that to Gemcitabine. up to this point I have tolerated the side effects pretty darn well, unfortunately every time I have a scan some thing has progressed and then something has improved so it’s very confusing. I just had two rounds of SBRT for ogliometastatic lesion on my liver and my spleen Two days later I started on Taxotere Cyramza andNeulasta had my usual two days of feeling poorly but yesterday felt better until I got very very tired and I decided to take a shower. Long story short I I passed out in the shower thankfully I have grab bars and I really good husband. basically I slept the rest of the day and night , I’m also having some brown phlegm not much but I find myself terrified which has not been the case so far. I know the next step is a clinical trial, but if I’m passing out, I probably won’t qualify. I just need a little support. My husband is great but he can’t discuss these things And I have no more family left except nieces. anyway I just was hoping someone had had this same type of experience. The lightheadedness is different than what I’ve had before and very serious in my mind today it is better I’m just being very careful anyway just wanted to throw that out there any words of wisdom would help . Thanks. Livin Life and LouT 2 Quote Link to comment Share on other sites More sharing options...
LouT Posted January 8 Share Posted January 8 Sally, I'm sorry to hear about what you are going through. I have not had that much experience with any form of chemo/antibody or other treatments so I can't offer any real counsel on them. One thing I can say is that you may want to add a palliative care person to your treatment team. Their job is to monitor treatment and side-effects and work with the patient and doctor to reduce the impact of negative side-effects as a result of treatment. Please know that you are in my thoughts and prayers to get through this with as little discomfort as possible. Lou BridgetO and Livin Life 2 Quote Link to comment Share on other sites More sharing options...
tgif i guess Posted January 9 Share Posted January 9 i am not wise but can offer my early experience on passing out. my first visit with my oncologist, he sent me to a local lab for blood tests. i went directly to the lab and had 2 vials drawn. no big deal. the drive home was short and took me past the oncology clinic. while at a stop light i began to feel odd. i decided to cross the intersection and then stop at the clinic. i recall the light turned green but woke up after hitting a light pole. ambulance came and took me to the er. they had started an iv in the ambulance. that seemed to be the problem. dehydration. broke my wrist in the accident and needed surgery. the oncologist, ortho and general surgeon asked if i wanted to delay chemo after surgery. i said no and they agreed. general surgeon put in my port and ortho took over and did my wrist at the same time. all were interested in the healing process, which was slowed but it did heal. for decades i rarely drank water. i swilled about 6 liters of tab (then diet coke when tab was discontinued) daily. when i woke in the wrecked car, i poured out the diet coke in the cupholder and now only drink water. i have not had a problem passing out since. might not be the answer to your problem but hydration is important. might keep a check on your blood pressure too. i understand what you are saying about talking to others. i get my chemo in a setting with others in the same room. what you can say to someone in the same boat is different than what is possible with others. and what they can say to you. don't feel bad about posting here. we probably have the same thoughts. LouT, BridgetO and Livin Life 3 Quote Link to comment Share on other sites More sharing options...
Tom Galli Posted January 10 Share Posted January 10 Sally, Oh my, you've had a hard row to hoe! When my phlegm turns dark, my medical oncologist tells me to start Levaquin antibiotics and seek a physician appointment pronto. Dark phlegm is an indication of infection and it could be viral or bacterial. The Levaquin addresses the latter. An infection could also explain your passing out. Even a mild infection, given your chemotherapy, will cause extreme weakness. I'd see your GP and report these symptoms. Stay the course. Tom TJM and LouT 2 Quote Link to comment Share on other sites More sharing options...
Sallysh Posted January 10 Author Share Posted January 10 On 1/9/2024 at 11:45 AM, tgif i guess said: i am not wise but can offer my early experience on passing out. my first visit with my oncologist, he sent me to a local lab for blood tests. i went directly to the lab and had 2 vials drawn. no big deal. the drive home was short and took me past the oncology clinic. while at a stop light i began to feel odd. i decided to cross the intersection and then stop at the clinic. i recall the light turned green but woke up after hitting a light pole. ambulance came and took me to the er. they had started an iv in the ambulance. that seemed to be the problem. dehydration. broke my wrist in the accident and needed surgery. the oncologist, ortho and general surgeon asked if i wanted to delay chemo after surgery. i said no and they agreed. general surgeon put in my port and ortho took over and did my wrist at the same time. all were interested in the healing process, which was slowed but it did heal. for decades i rarely drank water. i swilled about 6 liters of tab (then diet coke when tab was discontinued) daily. when i woke in the wrecked car, i poured out the diet coke in the cupholder and now only drink water. i have not had a problem passing out since. might not be the answer to your problem but hydration is important. might keep a check on your blood pressure too. i understand what you are saying about talking to others. i get my chemo in a setting with others in the same room. what you can say to someone in the same boat is different than what is possible with others. and what they can say to you. don't feel bad about posting here. we probably have the same thoughts. Quote Link to comment Share on other sites More sharing options...
Sallysh Posted January 10 Author Share Posted January 10 Thanks, The blood pressure thing might be a possibility for me. My bp is always low. Having lived in AZ. for 40 years I’m pretty good about hydration. It’s almost a week and I’m usually feeling better by now. Oh well, one step ahead. Scruboak and TJM 2 Quote Link to comment Share on other sites More sharing options...
BridgetO Posted January 18 Share Posted January 18 You've been through a lot! I've never had an issue with passing out, but once I was woozy from a gastrointestinal virus and probable dehydratiion and fell getting out of bed and clonked my head on the nightstand, not injured but it was very upsetting. I can't imagine how scary it must have been finding you had passed out while driving. If you want an additional source of support, Lungevity has a couple of programs that might interest you. One is a Lung Cancer Help Line, where you can talk to an oncology social worker. The phone number for that is 844-360-5864. The other is peer-to-peer support. You can find out about both of these on the main Lungevity website, Lungevity.com. I know how important it is to have someone to talk to, and sometimes it needs to be someone other than family. I've used the Cancer Counseling Center at the hospital where I've received my treatment and found them really helpful. Hang in there, and I hope you can find the support you need. We're always here for you, too. Tom Galli, TJM and LouT 3 Quote Link to comment Share on other sites More sharing options...
TJM Posted January 18 Share Posted January 18 Sorry I missed this string. I too have been having problems with passing out or nearly passing out and I am not on treatment. I had a theory that since I gained a ton of weight during/after treatment and have lost all of it over the past year (50 lbs) that maybe some of the Chemo drugs were "stored" in all that fat I gained then lost. Engineers think of the darndest things! After doing a ton of blood work and labs one of the care givers at KP decided it was a combination of a low sodium level (it was low) and a severe vitamin D2 deficiency. Told me to use more salt and gave me some potent D2 pills ( take one a week for 8 weeks). I have serious doubts. Two things a Scotsman has is one, never an issue with too little salt and two a heriditary lack of vitamin D2! My appetite sucks and I have found that if I do not eat regularly I have to "hug the wall" every time I stand up. My primary told me to stand up more slowly. LOL. I cannot wait for my next scan. Which they will not move up. I am torn between feeling like a paranoid hypochondriac and a building concern of some kind of recurrence. When did I become so hesitant? Hope this helps a bit Tom Edit: I also have low BP and have had it for awhile. Been as low as 95/45. Again my primary thinks increased sodium will help that. So I have increased my intake of potato chips! laurie2020 and LouT 1 1 Quote Link to comment Share on other sites More sharing options...
Sallysh Posted May 13 Author Share Posted May 13 As it turned out, I could not tolerate the Taxotere at all , even after lowering the dose. I slept most of the time without feeling rested , many digestive issues, eye problems, sinus congestion, continued dizziness, loss of appetite, weight loss, raspy voice, and more. No quality of life. So just had three doses. Each one was worse The were then very small lesions in my liver and lung, two small to measure. No more chemo as that was my third line and probably would have same results. Sad went to Karmanos Cancer center in Detroit to see about a trial. The oncologist I met with seemed to get my frustration. Her recommendations were to do no chemo and heal from th lingering side effects. CT’s every 6-8 weeks and if measurable progression, she would find a trial. She runs the phase 1 an 2 trials. In a way it was affirming as I felt like I was in a catch 22. So I have had two CT’s, the first showed no changes but suspicion that original tumor may be recurring. No results from the latest, Which is another story. Anyway I feel much better but am afraid my hoarseness may be long lived. I am aware my breathing is worsened but I can eat again and have an appetite so quality of life is better. One step at a time. LouT, Pstar and Livin Life 3 Quote Link to comment Share on other sites More sharing options...
LouT Posted May 13 Share Posted May 13 SallySh, Sorry to hear about the side effects from your treatment. Although my treatment was surgical I can understand bad reactions to some of the meds I had been put on. The Karmanos Cancer Center seems to be a top-shelf research hospital so I'm glad to hear that they will monitor you closely and look for appropriated trials for you. Over the years I've read many other posts from people that had much success with trials even those at Stage 4. My prayer will be that 1. you don't have progression and 2. if you do they find a suitable trial that is successful in controlling or better, eliminating your cancer. Please keep us updated and stay connected. Lou Quote Link to comment Share on other sites More sharing options...
Sallysh Posted May 13 Author Share Posted May 13 Thanks. My hope too. LouT 1 Quote Link to comment Share on other sites More sharing options...
Sallysh Posted June 15 Author Share Posted June 15 Just an update. My last Ct showed a small progression in my right lung. I have been accepted into a clinical trial at Karmanos. I will start screening next week. Two drugs, both immunotherapy, Keytruda and study drug. My cancer has progressed slowly and Im feeling good. I will see how this goes. After my experience with Taxotere, I’m glad it’s not chemo. Quote Link to comment Share on other sites More sharing options...
LouT Posted June 15 Share Posted June 15 Sally, Thanks for the update. I've seen many good reports regarding Keytruda, and I hope you join that group. Lou Quote Link to comment Share on other sites More sharing options...
Livin Life Posted June 15 Share Posted June 15 Sooo glad you got into a clinical trial. I second what Lou said about Keytruda. I've heard some amazing stories about how effective it is. LouT and tgif i guess 2 Quote Link to comment Share on other sites More sharing options...
edivebuddy Posted June 16 Share Posted June 16 Glad you found a clinical trial. Glad it is with keytruda. No matter what the outcome of the trial drug, Keytruda can work miracles. tgif i guess, Livin Life and LouT 3 Quote Link to comment Share on other sites More sharing options...
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