I have been fatigued and get winded fairly fast. Does anyone have this and what are you doing to help the symptoms?
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I do the breathing but I do not have energy I’m so fatigued.
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I understand. See if your physician can get you an in-home therapist. You need to build your energy. It worked for me and it is gradual.
I will ask if that would be something I could try. Thank you
I had stage four small cell cancer--I had alot of pain after bowel surgery and I couldn't breath, they put me on all kind of breathing medication the abdominal pain was horrific the pain management people were use less they blamed everything on cancer, I started Keytruda and went to my primary she said stop taking the Amoxicillin and two days later my breathing went from 50% to 100% the pain in my abdomen was all gone, the the Cancer Dr. that was treating me said it was the Keytruda--I had only been on it for two weeks????--and I don't believe her--I had a PET/CT after four infusion and the cancer is all gone except for a small nodule in my lung Please keep a close watch on your blood work, don't let the toxins build up.
mdoll: I am sure he has toxins built up! He started with Keytruda. Was on that from 3/2019 - 11/2019. Then had some radiation for spine bone lesions. Then was put on chemo (Alimta + Carboplatin + Keytruda) from 12/2019 until 5/2020 because the cancer got a bit worse while on only Keytruda. His regime including the Carboplatin was cut short due to toxicity. He received 2 chemo doses with it instead of 4. He then continued with Alimta + Keytruda. Was given a chemo 'vacation' in April/May of 2020, but had some more radiation for other spine bone lesions (pain) in July during the 'vacation'. In ?August? he went back on Alimta + Keytruda. He has had a couple very brief breaks from chemo (at the times he felt he needed a break). However, the Alimta/Keytruda continues... No one has ever indicated there are problems with his blood work. His RBC is not terrible right now - all things considered. -That's not to say his red count hasn't been worse - cuz, yes, he has been transfused - twice. What did you notice on your labs?
If anyone has had better success with their treatment regime than my husband has had (see my generalized treatment regime on a reply to mdoll), please share what has worked for them. I can't help but think 'there has to be something better' with all the new immuno types and combos out there today... He has only had 'partial response' to his Stage 4, Non Small Cell Adenocarcinoma Lung Cancer, PDL1 = 95%. -Many thanks...
My absolute neutrophils were very high, I told them I had intermittent burning when I went to the bath room, because the WBC was at almost 14 I wanted a urine test she said she would be more comfortable taking it during the burning--I called my PCP and she did the urine test I had a severe UTI on anti bio. 1960 mgs for three days. Don't wait for them to say something (you) check because they just want to do more test and I believe if you have good insurance they will TREAT you to death. I told my Dr. if the next PET//CT doesn't show any cancer I will stop- the Keytruda -she almost fell of her chair I only have one very small nodule on my lung-- It cost my Insurance $25 thousand every time I walk through the door plus Her fee the blood draw it 's a money maker for them. So I question everything.
@carlies Hello, you’re dealing with some of the confusing complexities of oncology—lab work. You said that no one has indicated a problem with your husband’s lab but that he has gotten some blood transfusions. As a former oncology nurse, I would suggest that you ask for copies of his lab reports every time and then highlight the date, WBCs, RBCs, platelets and neutrophils. You might even make a simple graph to keep better track of things. See if that helps
mdoll - I also question things. However, one of the doctors on the 'team' doesn't like to be challlenged! It seems I always have more questions than time allows. Very frustrating.
Carlies, I understand your hesitancy in bringing questions or ideas to a doctor who may react as if they are being challenged. You have a right to ask questions and to get explanations you can understand. It's your husband's life.
Your questions about treatment options are worth asking.
Might you be able to get time with a symptom management nurse or other team member who would take the time to answer your questions and to discuss symptoms and solutions?
Welcome, Rosalea. Do you also have lung cancer? What type? What treatments?
Thank you, Colleen-. There’s another doctor on the ‘team’. I will reach out to him. We have been trying to get consults scheduled with him, but hasn’t been working...
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