what is next?
My dad has finished gem/carbo chemo ... - The Roy Castle Lu...
My dad has finished gem/carbo chemo and it has not been successful.he is supposed to start radio today but he cant do it because he is weak
Read more about...
13 Replies
•
LorraineDPartnerRoy Castle
Hello Daz
Sorry to hear your dad is not responding well to the treatment. It is worth checking whether he has an appointment for follow up with the oncologist. There may be options for radiotherapy after he has recovered better from the chemo or the team may want to consider whether any other treatment options are available. Do speak to his Lung Cancer Nurse specialist to find out what the next steps are.
If you need contact information for the nurse do call our helpline on 0333 323 7200 option 2.
best wishes
Lorraine
on behalf of the Information & Support team
in reply to LorraineD
Thank you so much.
Hi Daz
This is my first ever post - I lurk around these boards but I thought its about time I did something. I'm a 44 year old girlie who too didn't respond to gem/ carbo I have stage 4 squamous cell - both lungs and lymph node involvement - not only did I not respond to gem/carbo I had a flare up of multiple spots following it. I did however test ALK +ve after my third lung biopsy and having only started the treatment 4 weeks ago have had a great response.
I noticed earlier on in your posts someone asked if your dad had been tested for any mutations - has he? I was nearly not tested as it's incredibly rare to have any mutation in squamous cell but rare does happen. So if he hasn't been tested might be worth asking.
I really do send you every bit of spare strength I have as it's horrible when treatment doesn't work. Before I tested positive they were going to out me on second line treatment as even if you don't have a mutation they work for some people. It's maybe worth asking about this too
Good nutrition for your dad and rest will hopefully get him back up to fighting fitness.
The words that someone sent to me that help are - Never never never never give up and I like to add ever ever ever.
All the very best
Susan
I
in reply to Sammyboo69
hi Susan,
So Sorry to hear your words.
My dad has been admitted to hospital lastnite,they say he has a pneumonia infection and is recieving treatment for this, also He is in very good spirit and is a fighter.
Radio have said they will review his situation once infection resolved etc.
He has squamous non small cell lung cancer and is at stage 3b plus copd.
I wish you all the best
Daz x
Try going to natural health clinic like OHI in Texas or San Diego - many cured from cancer by going to raw food diet, doing coffee enemas, cutting out meat, diary, sugar, candy, etc. out of diet. no smoking, no alcohol
"Never never never never give up and I like to add ever ever ever." - Thank you for sharing that, Susan. I am having a tough time being positive as my cancer is back so I shall try to remember your mantra and might even add an extra 'never' & 'ever' for good measure!
Starter was: Two lung operations within 5 weeks.
Main Course: Chemo (Cisplatine/Vinorelbine) for almost 19 weeks during which everything that could go wrong, did go wrong!
Dessert: The inevitable 6 weeks of Mon-Fri. radiation.
Good luck with your treatment, long may the initial "great response" continue.
Maureen 
Maureen
sorry to hear things have not been going so well. Hope you recover well from the radiation and do let us know if we can offer any support, add any information or extra nevers.
best wishes
Lorraine
on behalf of the Information & Support team
Hi Maureen
I think my biggest fear in all of the situation I've found myself in is the dreaded 'we can do no more' so I've always taken to treatment with great gusto as it's better than nothing - I've only had chemo no radiation for me as the flare up after chemo introduce multiple little spots. Chemo was ok until my rbc count hit the floor and then it was what seemed like endless transfusions. I finished chemo mid October and had no treatment until the start of April and that period of nothingness was worse than chemo just felt abandoned so I'm quite excited by treatment lol.
It's really hard to stay positive must days though I feel like that's the only thing I can do for myself as the disease and it's treatment seems so out of my control - I used to worry about so many things but never about getting lung cancer I never even smoked so now I only worry about running out of treatment options and nothing else. So now I just say never never never ever ever ever
I just started my treatment friday. I sound almost same as you. Im 43 in both lungs also chest wall since it started from breast cancer that is metastatic now. I've had all the terrible side affects this weekend.
Hi ,Sammyboo69 ,
My wife has been detected with Metastatic Breast cancer and she has recently started her first cycle of Gem/Crabo Chemo. I was just curious of 2 things..when you said the Gem /Carbo dint work for you ,can you pls
tell me that
1)Are you Triple Negative ( ER ,PR and HER 2 )negative ???
2) What is ALK +ve ??Is it some kind of a test ?? We have not got something of that kind done for her.
3)With the said treatment you started responding well after 4 weeks ??Do i understand that part correctly in you text ??
4) Also can you pls share some info about being tested for Mutation. IS it BRCA 1/2 you are talking about. She has been tested Negative for BRCA mutations.
5)Did you loose your hair during your Gen/Carbo Chemo?? Frankly both of us are prepared for the hair loss thing ,but came across a few article on net which says this is a rare side effect in this treatment.
Her metastases has spread to 3 places in bones and couple of places on the outer skin soft tissues.
You inputs in this regards would be simply great and would be like a light at the end of the tunnel.
Apart from that we have also started some alternative medicines Ayurveda Herbal Medicine for her ,as we heard it helps gain and sustain strengths during the Chemo.
Sujan
Hi Daz - has he ever been gene tested? Susan
in reply to Sammyboo69
not as i am aware of Susan.
LorraineDPartnerRoy Castle
Susan
hope the ALK+ treatment is going well for you. A lot of people talk about the difficulty of managing when they are in limbo, between treatments or not receiving any active treatment. Finding ways of supporting yourself is important, whether that is attending a group, posting on the forum or doing other things that take your focus elsewhere.
Hope you get some positive effects from the treatment and you are not having too many side effects,
best wishes
Lorraine
on behalf of the Information & Support team
