Posted by Gerri on Feb 9, 2019 8:48 pm
Posted by ACH2015 on Feb 10, 2019 7:45 am
I am tagging some folks into this response for you.
bobby12 Addie DebB Rabbit googer have discussed brain metastases and radiation in other posts talking about NSCLC and SCLC.
This is the Lung Cancer Thread from the site. https://cancerconnection.ca/discussions/viewcategory/68
To access this from the main page, click on Forums, then Cancer Types, then choose Lung Cancer.
You can look through the posts and post there yourself.
Cancer puts us into a lot of tough decision making processes during diagnosis, treatment and recovery. Been there myself these past 2.5 years.
I commend you for researching and seeking first hand experiences to help your decision making.
ACH2015 - Andy.
Posted by Cynthia Mac on Feb 10, 2019 8:06 am
My Dad had non-small cell LC last year, but he didn’t go through the same treatment program as what is proposed for you. Treatment programs are set up pretty well uniquely for each patient, and they vary widely.
jorola also has some experience as a caregiver for someone who has LC, so I’ve tagged her in case she has additional information that might help you.
In the meantime, feel free to tell us a little bit more about yourself and your “support team” - the people around you.
Posted by Gerri on Feb 10, 2019 8:55 am
Posted by Elizabeth06 on Feb 10, 2019 9:25 am
welcome to Cancerconnections.
i just wanted to tag Tyka , as she has lung cancer and has spoken of her treatment for brain metastasis.
the other comment from your post that caught my attention was a reference to prognosis. I am a stage four breast cancer patient and while the prognosis available on the internet or referenced by the oncologists is 2 1/2 to 3 years, I am approaching 6 years of living with this disease.. I will never not be receiving some form of treatment, but, I am still living my life.
statistics are based on historical information, not on current treatments and protocols, or the individual involved.
the other issue is how freely people will say” well, you have to be positive”. you have been handed a shocking diagnosis with many unknowns ahead. You are allowed to feel a full range of emotions. We are still human.
this is a safe place to vent and express however you are feeling.
i hope things go well for you. Keep us posted.
Posted by Tyka on Feb 10, 2019 7:08 pm
On Wednesday, October 8, 2014 I was diagnosed with a malignant brain tumour that had metastasized from the original site which was my lung stage IV cancer. I wrote in my reminders on my iPhone -"I have lost my tomorrows".
HOW WRONG I WAS!
I had surgery to remove the brain tumour followed by Gamma Knife surgery which is radiation to a specific part of the brain. I had surgery to remove the tumour in my lung followed by chemotherapy and six then six weeks of daily radiation.
All treatments except for the surgeries have been done at Princess Margaret Hospital in Toronto. Since then I have had to have 2 more Gamma Knife surgeries on the brain because they have found more tumours. My oncologists ensure me that this treatment can be repeated many times.
The only side effects that I have had from the radiations to the brain are that I get tired easily but that is it.
The doctors follow me very closely - MRI's every 3 months for the brain and CT Scans or X-rays every 6 months for the lung. I have not had any reoccurances to the lung.
IT is not almost 5 years since my original diagnosis and I am leading a full and good life. I may be a little short of breathe at times and sometimes I worry that every little pain is a sign that the cancer has come. However, I have a wonderful family and lots of support and I keep a positive attitude as much as possible.
If I can be of any help to you, please let me know. I would be happy to talk to you anytime.
Posted by Gerri on Feb 11, 2019 4:36 pm
Posted by jorola on Feb 13, 2019 9:51 pm
I am a caregiver. My hubby had stage 3b non small cell lung cancer but I also have experience with small cell as well. I am glad you found this site. As you can see many people here to share experiences and support one another.
How are you feeling?
Have you got a good support network? We can also help connect you and your support group to resources as well. No one has to play super hero here, there is lots of help out there and this is no time to be shy about asking for help ok?
Please let us know if there is any help or resources you are needing. You can also check out this cool link too: http://csl.cancer.ca/
It is the:
Community Services Locator
What’s the community services locator?
Our community services locator (CSL) is a directory that helps cancer patients, caregivers and healthcare providers find the services they need. We have over 4000 cancer-related services listed. You can search for:
- emotional support programs
- how to get to your cancer treatment
- where to find a wig or prosthesis
If you can’t find what you need, all you have to do is email us or call an information specialist at 1 888 939-3333, Monday to Friday, anywhere in Canada.
Posted by rainbowpromise on Feb 14, 2019 4:04 pm
Posted by Lee Ellen on Feb 15, 2019 8:06 pm
I'm glad that you have a strong and loving support group, because that's very important as a practical matter and as a matter of mental health. The friends who suddenly dropped out of your world probably didn't know what to say at first; then, they didn't feel comfortable saying anything weeks or months later because it seemed too hard to explain the delay. If you really care about these people, I encourage you to reach out to them, or ask a mutual friend to do so on your behalf.
I'm very sorry that your first oncologist made you feel guilty. The vast majority (85%) of lung cancer patients got our disease because of our addiction to tobacco; we know what caused our disease, and we d*** sure don't need to be reminded of it. In one of my first visits to my oncologist, I mentioned that I knew that I'd caused my own disease; he stopped me and reassured me that no one deserves to get cancer. Anyway, I'm glad that you have a new oncologist!
I, too, have small cell lung cancer, but mine was caught incredibly early. I had a lobectomy, and am near the end of four rounds of chemotherapy (cisplatin and etopocide.) The next step will be prophylactic cranial irradiation, and I, too, dread that. I wish you the very best of look, and look forward to learning of your progress.
Warm regards, Lee Ellen
Posted by Gerry613 on Feb 16, 2019 7:45 pm
Posted by danielday on Feb 19, 2019 5:10 pm
the oncologist who gave me the diagnosis had absolutely no empathy, felt like I got myself into this for being a smoker so I deserved what I ended up with. I quit on my own 8 years ago & yes I wish I had never started! I hope that despite a dismal prognosis I can get more time than what I have been given.
My mom has stage 4 (extensive stage) small cell lung cancer https://cancerconnection.ca/discussions/viewtopic/68/60777 . She smoked lightly, about 7 cigs a day (not even close to a pack) for about 30 years, and then she quit smoking about 7 years ago. Her oncologist immediately blamed her disease on smoking. She asked her "how many packs a day did you smoke?" There was no empathy despite the fact that 65%, to as many as 80% of all lung cancer patients, are in fact NON-smokers and former smokers who quit long time ago.
The truth is, there is no medical test that can be done to prove conclusively that smoking causes lung cancer; there is simply no such test. Genetic mutations, asbestos exposure, radon gas, city pollution, many other factors can cause SCLC. Oncologists rely on statistics, they say: Most lung cancer patients are current smokers and former smokers, so we must conclude -- it's smoking that causes lung cancer. Well, if that's true, then why only a small percentage of smokers (smokers who never quit) get cancer? It appears that quitting smoking increases lung cancer risk, despite of medical field's claims that quitting smoking reduces risk. I see heavy smokers in public spaces, I see my mother's friends and acquaintances who never quit smoking, I see old people in condo building where I live smoked all their lives -- none of them got cancer. They're all healthy. But my wonderful mother got rewarded for quitting smoking by getting extensive stage small cell lung cancer. Total injustice.
I want you to know that long term survival is possible even with ES SCLC. Yes, a median survival (where 50% die, 50% survive) of 5.4 years is possible. Here is one study from Medscape (which is owned by WebMD), make sure to read it (you have to register, it's free): https://www.medscape.com/viewarticle/873492
Make sure to take advantage of new immunitherapy. Opdivo (Nivolumab) is a new immunotherapy approved by FDA in August 2018. Talk to your oncologist about it.
Tecentriq has also shown added benefits and increased survival in SCLC patients (they completed Phase 1 trial in September 2018). Recent studies have also shown that antibiotics and anti-inflamatory drugs help combat lung cancer; they can shring tumor by 50% within weeks. See MIT study http://news.mit.edu/2019/bacteria-promote-lung-tumor-development-0131#.
Eat well so you have the energy and strength to continue chemo and radiation. You will be fine. Think positive. Never, ever give up on yourself.
Use everything at your disposal to fight this disease. If you run out of bullets, use sticks to fight this disease. Fight, fight, fight. Do not give up.
Posted by danielday on Feb 19, 2019 8:55 pm
On Wednesday, October 8, 2014 I was diagnosed with a malignant brain tumour that had metastasized from the original site which was my lung stage IV cancer.
IT is not almost 5 years since my original diagnosis and I am leading a full and good life.
Posted by jorola on Feb 23, 2019 5:02 pm
Most likely after you are done your chemo you with have repeat testing done, CT scans, to determine the effects of your treatments.
Have you have any scans done during your treatment? What did they show?
Depending on the results, your doctor will discuss what other treatment options are available to you. Besides traditional treatments of chemo and radiation, Immunotherapy, if you have the correct mutation, may be one option and be sure to ask about clinical trails as well.
How are you doing? Handing treatment ok? Have you got a good support system?
We are here to support you in any way we can so please don't be shy to ask ok?
Posted by ConnieLee on Feb 24, 2019 3:45 am
chemo is better than expected. Fatigue mainly. It's early and hope this doesn't change much towards end of the treatment. 6cycles.
Posted by jorola on Feb 24, 2019 12:51 pm
Glad chemo has been mostly manageable for you. I can understand getting the results of the scan of your head is scary. It was always the scan that scared me the most out of all my husband's scans.
Yes there is further testing that is done to confirm the type of mutation. I posted more information about immunotherapy here
It is in the other post you commented on with Afsi regarding Keytruda so I will not repost it all here.
I hope you head scan and your upcoming scan in 3 weeks give you both good news. Please keep us posted ok?
Hey I noticed your posts are in the middle of the night...you sleeping ok? Just worried.