Offered chemo plus Nivolumab prior to right upper lobe removal

Hi Shortyshortshort I don’t have personal experience of this, but hope you don’t mind me sharing my thoughts.

I have always thought with my treatment, that the oncologist are the experts and I have to trust that they are doing the very best for me. However I have also found my oncologist and lung nurse to be very approachable and are happy to discuss any concerns I have had. With this in mind, I think it may be worth you having a chat with your oncologist so that they can explain the benefits of having treatment first compared to surgery first. If you call your lung nurse and explain your concerns, it will be easy for her to arrange a call from your  oncologist to discuss this with you. 

Hopefully someone with more experience with surgery and chemo will be along to chat with you soon. 

Hi Chelle, thanks for your reply.  I’ve not actually seen a doctor of any variety yet, which shocked me, I’ve met one of the nurses and spoken to a lot of the nurses on the phone, they haven’t been able to answer my questions but have been extremely kind and supportive.  I see the thoracic surgeon for the first time on Monday 16th and my Oncologist the following Monday so I will prepare a list of questions for both of them.

All my tests have been delayed by all the strikes, which hasn’t helped but i have now had everything though they won’t send me copies of the results.  They’ve given me all the results by phone but won’t send me copies which I don’t really understand, given they are simply  factual results about me!

I’ve been put on beta blockers recently as my anxiety since I got the news has been unbelievable.  I work full time but have been off work since getting the call telling me I had this lung cancer.  They’ve made me a bit dizzy and I fell yesterday, cut the back of my head open and was at the hospital all afternoon and now have stitches and a very large dressing slapped on the back of my head just to add to my joy!

Thanks again Chelle 

Shorty

Hi Shortyshortshort

The purpose of the pre-op chemo is twofold;

1. To ideally shrink the tumour ahead of the op

2. To prevent the chance of spread by killing off any escaped rogue cancer cells in your blood stream. 

Chelle is correct; trust your cancer team. When going through my diagnosis/treatment plan, I decided that my approach was that my job was to simply turn up for every test  and/or treatment plan and it was my cancer team's job to determine the best treatment . to keep me informed and to support me through that plan.

I hope this helps a little bit.

Kegsy x

Thanks for your reply Kegsy.  

I’m hoping the trust in my cancer team will develop once I’ve actually met some of them.  It terrifies me that I’ve not seen a doctor yet, despite being told I had cancer back on August 24th.  Tomorrow cannot come soon enough for me!

I think I’d also feel better if other people on these forums were being offered neo-adjuvant chemo plus Nivolumab.  I’ve searched through the posts and everyone else seems to be offered surgery first and say surgery first is the “gold standard” treatment for resectable lung cancer.

Thanks again for your reply.

Shorty

Hi Shorty.

I do  trust that my oncologist is doing his best for me but I still feel it’s right to question the reasons for recommending one treatment over another. So I hope you get the answers you want when you finally meet your doctors.

As this neoadjuvent treatment has only recently been approved that could be a good thing. It may just mean you are being offered the latest treatment. Or it may be because of the particular size/ location of your cancer. Every one is different.

I was the other way.. lobectomy first. My docs were certain it would be Stage 1. Get on with the op, no chemo after just get it gone. But when they did the lobectomy they found it was bigger than Pet scan had suggested and had spread to pleura. So maybe chemo before would have been better…  

I hope it will all be clearer once you see someone face to face. Good luck.. and let us know how you get on. 

Hi there,

My mum is currently undergoing this treatment plan. She’s had her second round of three chemo plus immunotherapy treatments. She’s doing ok but very tired and lethargic. The plan is to have surgery once she’s recovered from her third round. Hope this helps. x

Thanks for replying Baytree, that’s helpful.  I saw the surgeon yesterday and he also gave me results from the echocardiogram I had last week.  Unfortunately I have impaired function of the left ventricle and mitral valve regurgitation.  He is unable to clear me for surgery yet due to these newly found conditions.  He has referred me for an urgent full cardio work up with stress tests.  Again, this was a serious shock as I am very fit and walk miles every day and swim at least 4 times a week.  The good news just keeps on coming!  Dependent on the outcome of the further tests, he hopes to still offer Neoadjuvant chemo plus Nivolumab followed by surgery to remove the right upper lobe, but this treatment is on hold until I’ve had the further investigations.  

Hi Reb, thanks for replying.  I’s great to hear that your mum is also undergoing this treatment plan.  (Sorry, I mean it’s not great at all that she has lung cancer, I’m so sorry, but great that she is being given this new treatment.  I’ve read the study (Checkmate 816) that has resulted ion this new Neoadjuvant treatment plan now and it has given very promising results).  It sounds like she is coping with it well.  Can I ask has she had any nausea or vomiting and weight loss with the treatment?  Many thanks and all the best to your mum.

Hey there,

No nausea/vomiting but she did have some diarrhoea after her second round.  But the specialist prescribed her medication for potential side effects so that has helped. X

Just when you think you know where you are with this thing there is always a "but". Sorry to read about the heart problems but  I can see why they need to check you out properly first. I'm a big walker, cyclist etc and went into my VATS (top right) lobectomy as "strong as an ox" heartwise.  I recovered really well from the op itself but it gave me serious arrhyhmia and high BP.  Fairly common apparently etc.  Under control quite quickly and just down to betablockers now (op was in July)  while i go through my chemo but they hope i will be able to come off after. 

Hope you get the extra heart checks quickly so you know where you are.