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in april i was diagnosed with lung cancer took 13 rounds of chemo , the mass shrunk to 1/3 of its size was sent for radiation to eradicate the cancer , right the last day of my radiation the dr wanted to do whole brain radiation I said no so she ordered a MRI of the brain and boom i went for zero lesions in the brain 3 months earlier to 22 microscopic lesions she got her 10 whole brain radiation treatments on me ,she told me the side effects would make me a little slower , and my hair might fall out now she wants me on memantine to protect my memory , my memory is fine right now , but the side effect for memantine are deadly ,another thing i was suppose to receive the same treatments every day only they were different i had several days with 30 sec or under on each of 5 treatments then on other days I had 2 that took 67 sec and 3 under 30 secs she says i got 300 ce of radiation each time but seems to me they should have all kl=lasted the same amount of time I am 67 years old but I swear she got mad because i handled the treatments better than others my age and younger/ i have one treatment left , and im considering forgetting it what do they plan to do tomorrow that will make me need mematine ? I really need some help i feel alot of this is for money not my health what do you think
ReplyMy mother was diagnosed with stage 4 breast cancer in 2013. She had a mastectomy and was treated from then on with drugs such as tamoxifen, Ibrance etc. until those were exhausted. She then was involved in a stage 2 trial but had to withdraw due to side effects. Now, she had an MRI at the end of July which showed two lesions in her brain. They recommended SRS and after treating the first lesion she had another MRI which showed 15-20 new very small lesions.
Her RO is recommending WBRT but my mom, who is 82 and has some cognitive issues, is concerned with the side effects. Primarily on her ability to think and take care of herself. Her RO made it sound almost like a walk in the park. I have a hard time believing it’s not a big deal.
And does it have a positive effect on overall survival rates, statistically?
Your thoughts?
I had a low dose full brain radiation and a year out I am still extremely dizzy brain fog and nausea with motion like even making my bed. I have a low-grade stage to astrocytoma glaucoma in my left cerebellum. The tumor is not operable because of The diffuse tumor. 4.3 cm. It has been a year out and I am still not feeling better. Do the symptoms ever go away?
ReplyHi Toya-
I am sorry to read of your health challenges. Without knowing the dose of radiation it is impossible for me to reply to your question accurately. I will say however, that evidence-based non-conventional therapies may be able to help your brain function including exercise, brain games, nutrition, supplementation, etc.
Good luck,
David Emerson
ReplyWhat are your thoughts or what do you know about a low dose, whole brain radiation? This would be done as a follow up from a successful chemo treatment for CNS lymphoma.
ReplyHi Lisa-
That’s a tough question to answer without knowing your age, stage, goals, etc. I will say however, that it is important to weight the risks and benefits of each therapy. It is probable that your oncologist has understated the long-term risks of whole brain radiation.
Lastly, there are a number of evidence-based non-conventional therapies, such as the link below, that can reduce your risks. Conventional oncology does not study or know much about non-conventional therapies.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7651762/
Good luck,
David Emerson
ReplyThanks for the speedy reply. I’m asking in regards to my mother, who is 79, and, until 2 years ago, was in very good health (only on a low dose hormone and a low dose anti depressant). Because she has taken such good care of herself, she got through an 8 round chemo treatment for a brain tumor stemming from an ocular lymphoma diagnosis (it’s called CNS lymphoma). This came on suddenly. A lot of things have come on suddenly in the past 2 years for her. It’s considered a complete response, or in complete remission. The low dose, whole brain radiation (for 10 days) came as a shock to her. This would be as a sort of safeguard to try to make sure all the cancer cells are gone, or so the doctor said. She doesn’t want to do it as she’s afraid of “frying her brain.”
ReplyI had a brain seizure a year ago with surgery to remove a tumor on the upper left side of my brain. It’s been determined to be from metastasized breast cancer. I had 4 more smaller tumors which needed targeted radiation for 10 sessions. This appeared to help with shrinking the tumors a little. I had an MRI last month that showed a New tumor and that the old ones have grown. My radiation oncologist suggested I get 10 sessions of whole brain radiation starting right away. I concentrd – even though I had reservations about it. My RO assured me that it would be painless and w/o side effects. Well here I am 3 days after I finished with side-effects literally coming out of my ears! ( no hearing on left side, no taste, no smell, bad cough, exhausted, mouth sores and watery/blurry eyes. Did I make a big mistake?
ReplyHi Janis-
I am sorry to learn of your health challenges. I can’t say that you made a mistake because not having radiation could have caused problems as well. Managing metastatic cancer is a challenge. You appear to be doing everything you can which, in the case means that you are between a rock and a hard place.
I think there is a good chance that some/all of your side effects will lessen or even heal. I believe in therapies such as exercise, nutrition, supplementation, brain games, etc. when you feel up to it.
Hang in there,
David Emerson
ReplyHad surgery left upper lobe removed due to small cell lung cancer. Tumor was 1cm and no other cancerous cells found.
Will have 12 chemo treatments for prevention. Furthermore, after chemo they want to do radiation to my brain. I am 60 y/o, working full time and raising grand children.
Please advise
Hi Carole-
Several things. First and foremost, I am sorry to read of your SC lung cancer. Secondly let me say that you are in charge of what therapies you undergo. Oncology may recommend therapies based on previous experience, research, who knows what. But you have to do what you think is right for you.
Having said that, I have to say that by asking for my advice, you are questioning your oncologist’s recommendation to undergo whole brain radiation. Especially since you are already undergoing 12 chemo treatments for “prevention” as you say.
When you say that the tumor found in your upper lobe was one centimeter, I am guessing that this is a relatively small tumor. Combined with the fact that your cancer has not spread (“no other cancerous cells found), you believe that our small cell lung cancer is local, not regional and not systemic.
I am also 60 years old. Though I am a cancer survivor myself, I make decisions based on the assumption that I will live for decades to come. I think that you should make treatment decisions this way as well.
I think your decision comes down to weighing the risks and benefits of more or less treatment. More treatment being “they want to do radiation to my brain.”
If you undergo both surgery and chemotherapy, both to kill/remove lung cancer from your body, what is your risk of relapse? In other words, a local, 1 cm tumor, is considered to be early stage? Perhaps SCLC stage one?
What is the published risk of relapse of stage 1 SCLC that is surgically removed?
If you undergo 12 rounds of chemotherapy, what is the published risk of side effects, secondary cancers, organ damage, etc. caused by this “preventive” chemotherapy?
If you undergo whole brain radiation, what is the published risk of side effect, secondary cancers, brain damage, etc. cause by this “preventive” radiation?
I apologize for asking all this silly questions above. I’m just trying to illustate how I think and how you should think- what questions you should consider before making any sort of decision.
And by the way, you should be able to ask your oncologist any/all of the questions above. All board-certified oncologists should be able to explain your risks of side effects cause by both “preventive” chemotherapy and radiation.
Yes, my guess is that there is a small risk of your SCLC relapsing. However I believe that the risk of side effects from both your chemotherapy and radiation is greater.
I would love to know what you think, what decisions you come to about your therapies. Let me know if you can.
Thanks and good luck.
Sincerely,
David Emerson
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