Sallysh
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Posts posted by Sallysh
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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.
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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.
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I am working more closely with my radiation oncologist who is wonderful. The doctor at U of Michigan will consult as needed. I actually did talk with the medical oncologist about my “feelings”. . Difficult but by gosh he got it. He would recommend exactly what the Michigan guys thought. Going ahead with radiation to spleen and liver Mets. The only two I have. Will keep updating. Thanks for the support.
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It’s been a while since i updated my status but long story short, after chemo and radiation, I started durvumilab. After three rounds, a Ct showed new lesion on my liver and increased activity in my lungs. So oncologist stopped immunotherapy and put me on Gemcitabine and carboplatin. At that point I decided to get a consult at U of Michigan with a highly recommended oncologist. I did that and he said that my treatment so far was correct and all he recommended was eliminating the carboplatin to reduce side effects. No trials available at that time.
I had another Ct scan last week which seemed to indicate shrinkage in lung area but growth of liver lesion ( and a weird spleen thing). I requested to see the scan but he declined saying ho couldn’t interpret. I then stated that the radiation oncologist could and he agreed. In that meeting I asked at least three times if the liver met and spleen could be biopsied or treated and the general answer was there’s no point, you still have cancer. he wants to just continue and rescan in a month. It took me less than an hour on internet to find that they can be treated, especially if there are few Mets. That’s all I have. I met with radiation oncologist and it took him five minutes t start talking about what could be done. He wants a pet scan, especially to check out lungs. I have decided that I need a new oncologist as this one seems to have just given up in a way. He doesn’t consult with the other doctors which has been a problem all along. I am 76, feel very good and have tolerated everything pretty well. I just wonder, is there a point age wise where some doctors just think it’s not worth trying new things. Hopefully I am not to far along treatment wise to go to U of M or Henry Ford Cancer Center as a patient. If I can keep my radiation oncologist I will, he has been great. Not a short story after all
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I was getting ready to post a very similar post. I had very good results from the chemo radiation. Tumor shrunk to almost nothing at end of April and no progression Started on durvalumab in May. After three months a Ct scan showed lots f progression. A follow up PET scan indicated many lymph nodes, mass in right lung and spot on liver and spleen cyst now lighting up. Now on gemzar and carboplatin and basically told OS average 8-12 months. Stunned. I have an appointment at U of Michigan this week and hope there is some other option. I still feel good, except emotionally.
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My situation was a little different as I underwent chemo radiation that shrunk everything a lot. My oncologist then wanted me to consider surgery. Radiation was high dose which makes surgery more difficult. I too saw a surgeon who was “willing”. To do the surgery. However the complications, especially because of the high dose radiation, were daunting. I determined not to do the surgery and started immunotherapy. The immunotherapy (durvalumab) has failed and in a mere three months the cancer has spread to many lymph nodes and my other lung and liver. The surgery would not have prevented this. I also have mild copd so can identify with your mother. I would agree with The other comments and get more input from lung cancer specialists.
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I’m sorry you have such side effects. I had radiation and chemotherapy at the same time. The radiation did not add anything to side effects but fatigue and some difficulty swallowing that was temporary. I had nsclc cancer in upper leftI lobe with lymph node outside my lung . I only had one round with cisplatin which was too hard on my kidneys so was changed to carboplatin with the etoposide. Less side effects. Fluids really do help although it’s hard to force them I know. I’m just on durvalumab now for the next year. The good news is the chemo and radiation worked and the tumor is much smaller and less active. So hang in there. Best always
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So glad to hear! I started reading your Cancer Words. You are a terrific writer and you have really captured so many of the feelings. I am way behind you. I was diagnosed in November 2022 with stage three a squamous cell lung cancer. I am now on a durvaluminab immunotherapy but I’ve only had a couple of infusions. I find your insights very helpful. I wanted to comment on a couple of your postings, but I couldn’t figure out how but that’s OK. I hope you continue to do well. Thanks for sharing your thoughts and feelings.
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This may be an unusual problem. Or not a problem at all. I had double mastectomy’s many years ago. I just got a port put in for my immuno therapy treatments. When I consulted with the surgeon she showed me where she was going to put it right above where my bra is. However, now that it’s done, I see that it is right under my bra and prosthesis. This may be a great thing as it will never show, but I wonder if it will give me problems in the future . has anyone else ever had this issue? Thanks.
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I haven’t been on Keytruda but I know of some folks who have, with no or little side effects. I Amon another similar drew, Imfinzi (durvalumab). No side effects but it’s early. My chemo doc says 92% hav none or very mild. All th info has to cover ALL side affects ever experienced and can be scary. I guess I wouldn’t make my decision based on the worst Don’t lose hope, as hard as that is. Good luck.
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I too have a spot on my spleen. It as remarked on many scans ago. A tiny cyst. Unfortunately it keeps growing and during my last pet scan, which showed great success in my lung - mostly gone and the remains very inactive , the spleen cyst showed mild suv. As noted by all of you doctors are skeptical it is from the lungs which responded well to treatment. Not a place lung cancer goes. But still scheduled for MRI this week. At best another delay in start to immunotherapy . By the way for those who were following my dilemma about having surgery following high doses of radiation and chemo., I chose not to have it with input from the surgeon. He actually agreed at the end.
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I decided not to go forward with surgery. After discussing with the surgeon, he agreed it was a very reasonable decision under the circumstances. I will be starting durvalumab, probably next week for a year. I have a PET CT scan tomorrow. Hopefully it will show even bett results than the Ct.
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Thank you both. Lou, I did read the article you mentioned. In fact I’ve read it a few times! My treatment plan was exactly as described for IIIA. My radiation oncologist has shared others with me, none of which include surgery in the middle. My cancer was considered inoperable but suddenly it’s not? The only answer from my medical oncologist is that’s the only way to know it’s gone, while acknowledging recurrence. I am meeting with him Monday The radiation oncologist who I have the most faith in sees no benefit. Anyway I am having pulmonary function tests, conferring with surgeon and then will decide. My thinking has been a little fuzzy but I had a blood transfusion Thursday so am feeling better! I appreciate your thoughts and will be at peace with whatever I decide Although there may be some bumps until I do
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Well the answer to my question is yes but. Now must make decision on surgery. When I was diagnosed nosed, the treatment plan was concurrent high dose radiation and chemotherapy- cisplatin (changed to carboplatin do to kidney issues) ans etoposide followed by durvumalab for a year. All explained thoroughly by my radiology oncologist, who shared studies, stats etc. my medical oncologist started bringing up surgery along the way. I agreed to go to a surgeon who bluntly said most surgeon would not do it because of the high dose radiation and my copd/€asthma but he was aggressive and would consider. Very many downsides for mewtith the only pro being that tumor would be gone. Of course recurrence still a possibility. I don’t get why the medical oncologist and my pulmonologist are pushing this and neither does my radiation oncologist. Very frustrating., especially as my tor has shrunk dramatically according to Ct.
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I have stage IIIA Squamous cell cancer in my upper left lobe with one positive lymph node in the mediastinum close t the left lung. Because of that node my cancer was determined to be inoperable. I have had high dose radiation and chemotherapy (finishing chemo this week). Unofficial looks at the mini Ct scans done daily to ensure correct alignment show changes suggesting node is gone. My medical oncologist has referred me to a thoracic surgeon for preliminary evaluation and Ct. if no surgery immunotherapy with durvalumab. With all my questions and concerns, it hasn’t dawned on me to ask whwthe you can have immunotherapy AFTER surgery in my situation. I will certainly ask my growing team of doctors but wonder if anyone else has had this experience. If this is possible I would be able to get benefits of both, which has been a dilemma. Thanks
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Thanks for your reply. Adds to my hope basket
- Justin1970 and Judy M2
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Have had two hydration infusions. After just one and the change to carboplatin, my kidneys are almost normal so that’s great. Far fewer side effects from carbo. Still nauseous but not so bad. Only three more radiation treatments. The chemo doc wants a pet scan in 5/weeks, although radiation doc says 12. Chemo doc really wants me to do a surgery consult if the lymph node outside the lung is gone. I’ will do it but don’t think surgery will be good based on my copd and age (75), along with the high dose of radiation, that was directed at cure. So many conflicting thoughts. I want to live, of course, but want good quality of life too
- Justin1970 and LouT
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Thanks for your reply. I will be getting four hydration infusions before my next round. Finished my second today, first with carboplatin. I also had only one course of the Cisplatin and that damaged my kidneys. Reversible most likely. Still optimistic but when there’s a change, I do have moments of panic. Goes with the process I guess.
- Tom Galli and Justin1970
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Thanks Lily and Tom. Lily I was nauseous every day after first round with Cisplatin, right up to two days before starting again. So far nothing with carboplatin. Discussed with my radiology oncologist today. He is the most invested in the cure. He basically said the same. He said if he needed the tree would choose carboplatin. Advised not to fall into the myth that bad side effects means it’s working better. Did you have kidney problems?
- Justin1970 and LouT
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I have squamous cell with growth in left upper and one. Lymph node in medastinum (sp?) between lungs so IIIa. The regimen was Cisplatin an vp6 and radiation at same time, followed by immunotherapy. Goal of chemo/radiation was cure as I am not good candidate for surgery. On day 20 of radiation and starting second round of chemo. Went in today an chemo nurse ask if the dr had to me he was changing the Cisplatin to carboplatin because of kidney issues. Now two new worries, the kidney values are bad and my understanding is carboplatin is not often used for cure. I will be getting biweekly kidney hydration but still worry about cure. Any advice or thoughts
Breast cancer survivor w/8 mm upper nodule seeking info after 2 CT scans
in INTRODUCE YOURSELF!
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I would ask for a biopsy. I also had breast cancer many years ago and then was diagnosed with lung last year. A biopsy will tell whether it is from the breast or a new cancer. That’s very important to treatment decisions and outcomes. Sound like you’re in a better location for good treatment. Good luck