catlady91

Hi
Thank you everyone for your kind messages and support throughout my journey,all of you have really helped me and I have needed your support along with my family and friends who have been absolutely fantastic and so loving and caring and strong for me and each other, they really are a special family that I have been lucky to be part of and really couldn't have done it without them and I can't forget my lovely puppy bonnie who I got at the start of my cancer battle who really has made me so happy and been there every step of the way,
Hopefully now I can just get on with living and enjoying my life,
Thank you again all the best and take care Justin x 

Great news, Justin! Better days are ahead. Enjoy the little things. 

That is really awesome Justin! Now you enjoy the holidays and time with family. Put this cancer thing away for awhile and try to only have good thoughts.
Pam

Great news Justin!  Keep up the positive attitude and the physical conditioning... 
Lou

Hi all, just the news we were hoping for and needed. Jus has been incredible thro this massive battle and we are so very very proud of him. I know it's been really tough Jus and you would have wanted to give up, and I know we've pushed you to your limit , but you've never given up and it's paying off, keep up this brilliant attitude you have as it not only helps you and us but everyone on this site, you are an inspiration and we love you very much and here's to a better future xxx love you sonzie xx mum xxxx

Hi everyone 
So I spoke with the neurosurgeon and they are really pleased with the result of the operation and sure they got it all out, it is the same as my lung cancer so not a new variant I have a follow up mri scan December 28th and then every 3 months after that, he told me if i ever need them in the future they would be more than happy to help me again which was really reassuring to know,  i went to physio and have some really good excersises to do which I'm sure will help they were really helpful and happy with the progress I have already made my coordination is coming back great and the movement and mobility are getting better everyday, I feel so much better in myself now , I am gradually being taken down on the dexamethasone steroids which is both worrying and brilliant because I'm afraid things will go wrong if I stop them but glad to get rid of the bloatedness in my face stomach and neck it's so uncomfortable now and really don't like it I know it's a small price to pay but I just want to be myself again,
I went for a coffee and a mile walk yesterday with my wife and bonnie and it felt fantastic to just be out again I do feel very fatigued but was told to expect that for 6 to 8 weeks but I am sleeping better now I'm more mobile so all in all I am having some good news to update for a change lol, 
I hope everyone is doing well take care Justin x 

My has her CT scan tomorrow so hoping nothing has changed. There was that scare last month in Poland when my mum had an x-ray because of a bad case of laryngitis and that awful GP saw something in the lung and wanted her to do a CT scan. She booked an appointment with a lung specialist and oncologist in Poland and he said that the GP mixed up the lungs (she said there was something in the left lung when my mum's cancer was in the right) and that the x-ray showed scarring in her right lung which her oncologist in the UK already told her that she had from heavy radiation and that she could wait until her follow up scan. 
I'm hoping that there are no changes since July and that the specialist in Poland is right. Mum feels well otherwise. We received good news that she doesn't need a knee replacement which mum was worried she would need. The doctor said that physio and going to the osteopath helped improve her knees greatly. Hopefully more good news will follow.
She also has a consultation with the oncologist 2 weeks after the scan. I don't know why the wait is always so lung. It seems like there's always 2 weeks between the CT scan and the results.

Hi 
I really hope you get some good news from the pet scan,I know how worrying it is but it's great news that the other lesions are no longer viable and hopefully these others can be sorted out soon, I recently had a tumor removed and am hoping no more come up so I have an idea of how you and your wife feel and you are right all we can do is take one day at a time,
All the best Take care Justin 

Hoping and praying for a good scan result for your mom.

Hi Monica 
I hope your mum gets good news i know the waiting is crazy isn't it and messes with your mind it's terrible,I'm glad your mum's knee is better and doesn't have to have an operation let's hope the good news continues, goodluck with everything Take care Justin x 

Thank you so much for your replies Lou and Lily. Mum is seems happy and busy. Hopefully the news will be good. I'm glad to hear that your liver spot was benign.  

Thank you so much for your replies Lou and Lily. Mum is seems happy and busy. Hopefully the news will be good. I'm glad to hear that your liver spot was benign.  

Sending you the most positive vibes @catlady91! Hope you hear the best of news.
I hear you about delays, it took my cancer centre 2 weeks to tell me the results of my recent abdominal MRI! Doctor called yesterday and asked if I have time to talk. I got so scared since I assumed it was bad news. Instead he said "your oncologist wanted me to call and reassure you that liver spot was benign", phew! He is a nice doctor but gave me such a fright. I wish doctors think a lot more about how to interact with cancer survivors.
Best wishes for your mom!

Your mom will be in my prayers for a clean scan.  Please keep us updated.
Lou

My has her CT scan tomorrow so hoping nothing has changed. There was that scare last month in Poland when my mum had an x-ray because of a bad case of laryngitis and that awful GP saw something in the lung and wanted her to do a CT scan. She booked an appointment with a lung specialist and oncologist in Poland and he said that the GP mixed up the lungs (she said there was something in the left lung when my mum's cancer was in the right) and that the x-ray showed scarring in her right lung which her oncologist in the UK already told her that she had from heavy radiation and that she could wait until her follow up scan. 
I'm hoping that there are no changes since July and that the specialist in Poland is right. Mum feels well otherwise. We received good news that she doesn't need a knee replacement which mum was worried she would need. The doctor said that physio and going to the osteopath helped improve her knees greatly. Hopefully more good news will follow.
She also has a consultation with the oncologist 2 weeks after the scan. I don't know why the wait is always so lung. It seems like there's always 2 weeks between the CT scan and the results.

My has her CT scan tomorrow so hoping nothing has changed. There was that scare last month in Poland when my mum had an x-ray because of a bad case of laryngitis and that awful GP saw something in the lung and wanted her to do a CT scan. She booked an appointment with a lung specialist and oncologist in Poland and he said that the GP mixed up the lungs (she said there was something in the left lung when my mum's cancer was in the right) and that the x-ray showed scarring in her right lung which her oncologist in the UK already told her that she had from heavy radiation and that she could wait until her follow up scan. 
I'm hoping that there are no changes since July and that the specialist in Poland is right. Mum feels well otherwise. We received good news that she doesn't need a knee replacement which mum was worried she would need. The doctor said that physio and going to the osteopath helped improve her knees greatly. Hopefully more good news will follow.
She also has a consultation with the oncologist 2 weeks after the scan. I don't know why the wait is always so lung. It seems like there's always 2 weeks between the CT scan and the results.

My has her CT scan tomorrow so hoping nothing has changed. There was that scare last month in Poland when my mum had an x-ray because of a bad case of laryngitis and that awful GP saw something in the lung and wanted her to do a CT scan. She booked an appointment with a lung specialist and oncologist in Poland and he said that the GP mixed up the lungs (she said there was something in the left lung when my mum's cancer was in the right) and that the x-ray showed scarring in her right lung which her oncologist in the UK already told her that she had from heavy radiation and that she could wait until her follow up scan. 
I'm hoping that there are no changes since July and that the specialist in Poland is right. Mum feels well otherwise. We received good news that she doesn't need a knee replacement which mum was worried she would need. The doctor said that physio and going to the osteopath helped improve her knees greatly. Hopefully more good news will follow.
She also has a consultation with the oncologist 2 weeks after the scan. I don't know why the wait is always so lung. It seems like there's always 2 weeks between the CT scan and the results.

Very good news Justin. Hoping and praying that this will be the end of the steroids and treatment and only scans in your future. Good luck with the physio.
Pam

Hi
The next step is meeting with the consultant tomorrow to find out about the tumor and what is next hopefully no further treatment will be required but I'm not convinced that'll be the case, they will hopefully do an MRI SCAN sooner than last time to find out if anything is growing I will probably find out myself as I'm gradually coming off the dexamethasone steroids and last time I did that I had seizure activity, the steroids have made my face swell and stomach which i absolutely hate as i feel very puffy around my eyes im hoping that will get better when i stop them i do feel a lot better and start physio Friday so im hoping that everything will soon be back to some sort of normal,
It would be nice to look forward to doing some everyday things and some stuff for Christmas with all the family I'm getting bored just lying about doing nothing lol,
I hope your mum and you are well 
Take care Justin x 

I'm so pleased to hear that you're continuing to do well Justin. What are the next steps in terms of treatment? 

I'm so pleased to hear that you're continuing to do well Justin. What are the next steps in terms of treatment? 

I'm so pleased to hear that you're continuing to do well Justin. What are the next steps in terms of treatment? 

Been a while since I updated. Dad completed chemo. A total of 6 rounds. lately he feels back to normal, which is good news. He has scans scheduled for next week. Then on the keytruda only every 6 weeks. I’m trying to figure out a better game plan as he is Pdl-1 negative and low TMB. I’m just glad chemo is over for now. My dad was not a fan 😕

Hi everyone 
Just a quick update and a massive thank you for all your messages,
I can now move my foot and walk again with the help of a stick and I can use my arm and hand a lot better today so everyday it seems to be getting better, I am really tired and don't sleep very well,I was told I would be fatigued for a while so anything I do is very tiring but I can deal with that as I have no pain from the operation apart from a headache, I even managed to have a look around a Christmas Market with my children and grandchildren yesterday which is something I thought I would never do,
I can't believe I had brain surgery a week and a half a go and was so worried about it going wrong and being left with mobility problems to where I am today it's just such a nice feeling to actually have some good news through this journey even if it doesn't last long I think you need a win now and then,
I hope your all well take care Justin x 

Hey All, 
Wanted to wish you a Happy Thanksgiving!  I had my scans this week and 49 months on targeted therapy, all continue to looks good.  We had an uncharacteristic visit with the oncologist.  He was the most optimistic we've ever seen him, the ALK data is demonstrating both in the US and Europe that first line Alectinib (without brain mets) is having a pretty long ride.  Doc said at this point while anything can happen, the likelihood of getting a seven year run on therapy is a realistic possibility.   I'm pretty realistic about this disease four years in; I've seen the whole spectrum so anything goes.  In the meanwhile, I will keep doing what I'm doing. Stay hopeful and just keep going!
Michelle