Osimertanib. Hello anyone who is there. I started it in July and after a bad stage am off it until 19th. I've tried so hard to find people on the treatment and I see my experience is not uncommon. It's a massive relief to know there are others. Go

Hi Dryngo welcome to the group, I am glad you have found us here.  Sorry to hear you are having bad side effects on the Osimertinib. Hope a lower dose will work for you. 

I am on a different treatment to you, but hopefully someone will be along soon to share their experience with you. 

Hello Dryngo,

I have been on Osimeritinib since Sept 2022 for Adenocarcinoma. I had surgery & IV chemotherapy , which ended July 2022. I was stage 2B.

I had allot of diarrhoea & vomiting the first few months, since then I have sore fingers and broken skin on fingers & brittle hand nails. I do have intermittent fatique.

I am out and about and love gardening and I am volunteering weekly. I am unable to work currently.

I have a 3 monthly CT, then bloods monthly and usually hear from the Macmillan RN monthly. Only see Oncologist if a problem.

I have been told this regime will continue for 3 years. 

How are you progressing?

R.

Hello R,

At last someone else - someone on Osimertinib - who is having "finger problems". You are not alone.  Broken skin, painful fingers, brittle nails which, with me, has now developed into Paronychia..  But overall Osimertinib is a winner.  It has certainly allowed me extra quality time.

Hello, well glad things are progressing well. I too get paronychia, seems to go and come but particulalry my ring finger. Fatique most weeks but I am substantially more active now than when starting oral treatment in September. 

R.

Good Morning Rose,

Another side effect was a marked drop in Calcium and Magnesium levels causing the need for one-off infusions and daily tablets.  But this was a minor problem.  Tuesday 13 June is "results day" for my latest scan.  Time to see whether the Tagrisso is wearing off.

Best,

Ian

Hello Ian, well good luck with the results.

No my bloodwork results though not entirely normal have not needed interventions. How long have you been on Tagrisso? Hope you don't mind me asking, but what Stage were you when diagnosed?

Rose

I was diagnosed Stage 4  in August 2021 after a chest x-ray for a cough. The prognosis  was 4-6 months.  I have been on Tagrisso non-stop since then and am happy to say that it has allowed me an active life. I still work part-time.  I have not had any chemotherapy, radiotherapy or other cancer infusions at all although my oncologist recommended that I seriously consider taking them.

I would be interested in your experience.

Ian

Hello Ian,

Well, its great that you are still working and that you got a diagnosis and were able to get on Tagrisso.

For me, I felt some shortness of breath and told my GP, she ordered a blood test, a D Dimer that was positive, this indicates usually a pulmonary embolus or someother change. So the GP then advised me to go straight to the ER, where I had the CT chest that showed the abnormality.

My Adenocarcinoma was in my lung, Stage 2 B, so it had spread to one other lymph gland. I was working in healthcare and took disability leave. I had a lung sparing lobectomy, then IV chemo, Cisplatin & Vinorelbine. I had this abroad where I had been living & working.  On the advice of my Oncologist there, I started Tagrisso.

Then, I felt I had to get back to see family in the UK and here I am.

Rose

Hello Rose,

Am I correct that you are on Tagrisso only?  What dosage? And how do you feel generally outside of your tiredness?

It may well be that Osimertinib proves to be an excellent inhibitor/suppressant for you as well, without the necessity for other treatments and at worst with moderate side effects?

I hope that you have an optimistic outlook.

I am trying all sorts of treatments for my fingernails - presently a right thumb and a left index finger - involving warm salt water soaks.

Isn't it wonderful that that is my only medical worry at the moment?  I am really not fooling myself.  I know what's coming down the line towards me but in the meantime.................

Best,

Ian.

PS:  I liken my cancer to an evil intruder a la The Alien (movie).

Hello Ian,

I like your positive take on it I am a naturally positive person, but certainly over the last year dùring the chemo particularly , it was not great and I know most people can get very discouraged.

At times I felt I was involved in a battle, of sorts.

I take 80mg daily and have only had to stop on 1 occcasion for 3 days, due to a body rash. Outside of my fatique, the IV chemo affected my taste for foods etc and I do like to cook, so I do not eat as well but have tried to increase fruit/ veg intake. 

I have been prescribed Ceftraben cream, which comes in a pump dispenser,  and use this twice daily on hands and feet. You can get it presribed via your GP or Oncologist.As I have also had skin breaks on my feet. It is super effective, also wear gloves when washing dishes or use dishwasher if you have one!!

I have frequent cold sores and tend to pick up any current infections, ie flu etc.

I have always enjoyed walking and I am lucky to have a wood closeby, so I try to do close to 10,000 steps a day. I am due to start an NHS funded weekly yoga class, it will last 12 weeks. I also have started a weekly, day volunteering in a formal garden close to me, mostly weeding really.

I read an article in a reputable paper recently that encouraged cancer patients to do yoga as well as walking, if able, as a recent study showed that cancer reoccurance stayed away for longer.

Sounds as though you are doing great!!

Rose