Posted by Tiah041369 on Oct 9, 2020 11:13 am
Posted by ashcon on Oct 9, 2020 1:12 pm
Welcome - I'm glad you found this community, though I'm sure you wish you weren't here.
You've been given a lot of not-so-good news that hasn't been supplemented with a clear and implemented action plan yet. Boy, I wish more doctors were aware of the impact of this waiting in a dark and silent cave had on us, especially just before the long weekend.
I am not a doctor, nor do I know what has been said or done, or not said or not done, by whom. But at first read of your story, it sounds like it was probably the surgeon who needs to be followed up with about the referral for radiation to start.
(As soon as I entered the care of my region's cancer centre, my family doctor was completely hands off, leaving all tests, treatments and referrals to the oncology team).
Can you go back to that surgeon, if you haven't done so already?
I'm assuming that you know it is in your bones because of scans or tests, yes?
Also it is possible that the reference to your liver is only about the effect the Naproxen will have on your liver. Pain meds tend to affect the liver. So if they are thinking that you are going to start treatment(s) for cancer - which is also very hard on the liver - they're probably just worried about keeping the dosage of painkillers down so that you will be OK to start your cancer treatments (when they start).
Hope that makes sense.
Hope you are able to get hold of someone today.
Hope that you have hope.
Hope that you know you are not alone - we're here for you.
Posted by SpeedyStill on Oct 9, 2020 2:36 pm
You have been given great information from Ashcon.
From what I read you need some answer from your Cancer Center.
There is always going to be tests and waiting periods but if we know what we are dealing with it is a lot easier to accept.
You are at the right place for some empathy and compassion.
Don't tell me you understand until you have walked in my shoes.
Love that saying.
Trapped feelings can be dangerous to our health.
When I share my feeling with a caring person or Community I always feel a little better.
love in your heart is love to share
Posted by Tiah041369 on Oct 9, 2020 8:33 pm
Posted by SpeedyStill on Oct 10, 2020 6:27 pm
Cancer is Cancer no matter what type or stage.
True understanding only comes from the experience.
Those who have not suffered do not understand suffering.
Prostate Cancer has always been plagued by this misunderstanding.
Cancer after you are told, every pain becomes suspicious.
I know because that's me.
All the Best
Posted by gwenny on Oct 11, 2020 10:15 am
Posted by Elsie13 on Oct 11, 2020 10:00 pm
Posted by Orlando on Oct 23, 2020 10:18 am
When my wife was first diagnosed with Glioblastoma Brain Cancer I confided in a few people. Our support group was quite extensive and as time went on the circle of support became smaller. It became smaller because a lot of people stopped coming around or stopped calling and it became smaller because I chose not to share with everyone. I was very upset at first when people whom I believed to be close friends stopped calling and seemed to stop caring. I am no longer upset with these people but I do know who I can count on. Currently, I am involved with The Hearth Center (Cancer Support), this group and I have several friends and family members with whom I can confide in.
2) Do you prefer talking in person, over the phone, by text or email?
I love face to face interactions. I can't stand texting or communicating via e-mail. However, I do enjoy talking on the telephone. Covid-19 has severely impacted my ability to get out and take a break from being cooped up in my house. Like many other people, I've been working from home since the start of Covid-19.
3) What is the most helpful when I confide in someone?
I have a few friends who offer me different things. I have friends who have been on a similar cancer journey so they are able to relate to my current experience. I have friends who have never experienced a cancer journey but they are still able to offer good advice and support. Generally, I feel that it is helpful for my circle of support to listen and be as supportive and understanding as they can.
Posted by Dauntless on Oct 24, 2020 11:26 am
Just had Afitinib stop working for me, and am having some difficulty with that as I wait to restart chemo on Mom 26th Oct. Also being tested to see if I have the gene mutation for another Targeted drug Tagrisso.
It will be three years in Nov since diagnosed and living with this illness.
I will continue to be open about it all, but, have a feeling some friends will slip away.
My two sons refuse to accept that I am terminal, they are very scared, one is 36, and one is 47, but, we are very close. I have one grandson only and always being on go, I had so many plans for him and me, but, the SOB and other awful side effects has made that impossible. I think that hurts the most.
I do spend as much time as I can with him, but, its not the same as if I was healthy.
I looked for support groups in my town, StJohns Nl, but couldn't find any, so, if anyone on here is from my city, would love to chat with people in the same or close situation as me.
Will continue to look for inspiration on this site, and so grateful it is here.
Posted by Cynthia Mac on Oct 25, 2020 10:36 am
You’ve been on the site for a while — have you been involved in the discussions in the Lung Cancer under Specific Cancers?
I’m about 60, and I was scared, too, when my Dad’s cancer was diagnosed and when it metastasized, so I can appreciate how your sons are dealing with your diagnosis. Cherish whatever time you are able to spend with your grandson.
Posted by Sher49 on Oct 25, 2020 10:44 am
Posted by Dauntless on Oct 25, 2020 12:03 pm
The Afitinib has stopped working, so I am going on chemo, but I would chat with Sailor or anyone on this journey I'm on.
I am interested in what treatments those with Stage 4 NSCLC are or have taken.
I'm not overly familiar with how to chat with a specific person.
I will search the community and see how that is done.
Chemo tomorrow, steroids today. I have had chemo before, immunotherapy, TKI, but for some reason very concerned that this is the final treatment.
Being tested for T790M mutation, wish me luck I am positive so I can at least have a run with Tagrisso, but, its chemo till then.
Keep the info and support coming, Hello again fro StJohns, Nfld.
Posted by Butterflies on Oct 25, 2020 5:20 pm
I was diagnosed with adenocarcinoma of the lung involving the brain, lung, adrenals, bone and liver back in November 2019.
I'm on a clinical trial and taking a TKI drug called EGF816 (Nazartinib).
This clinical study also involves the addition of the second agent called INC80 (Capmatinib) after 5 months of therapy in an attempt to prevent acquired resistance and delay progression. The study was to require core biopsies, both at baseline and at 5 months. However, I never received a tissue biopsy they only tested using blood plasma which revealed I did not have the T790 Mutation and will not receive Tagrisso. I am very upset about this and will find out this week why I was unable to have tissue from my liver or lung tested.
I was told that if my cancer progresses, the only treatment option would be chemo. I also just had a bit of a set-back as my last MRI a month ago showed new unmeasurable brain lesions. I just finished 10 rounds of full brain radiation.
So scared but trying to make peace with it. Fingers crossed that you and WestCoastSailor have the mutation.
Feel free to reach out.
Posted by Dauntless on Oct 26, 2020 6:49 pm
I started chemo this morning while waiting for results of the biopsy as my symptoms were getting worse and couldn't wait for results re starting Tagrisso.
I had to ask for this test, my oncologist did not mention it. Just mentioned chemo.
Just praying that it doesn't mets from lungs, as for three years it has been lungs only.
Its a tough journey we are on, and no one understands it if they are not walking it. You must research, advocate for yourself,
Take care, hope they will do the tissue biopsy as it is more accurate
Posted by Lianne_Moderato on Oct 26, 2020 7:00 pm
Thank you for sharing . I am sorry to hear that the Afitinib has stopped working. I hope you are able to move on to Tagrisso.
As an aside, to "tag" someone on the site to reply to them directly, you can type the "@" sign and then start typing their username. A list that matches what you have typed in will appear. Select the correct one and it will turn blue as your name shows above.
Keep us posted.
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