My Mum

[flatterycat]

My Mum had her second scan 3 weeks ago to check on progress. She was diagnosed stage 3b NSCLC in April this year and started treatment of two chem and immunotherapy even though her PDL1 (sp) was below zero.

After her 4th treatment she had a scan which showed shrinkage and that the lymph nodes had nearly gone. At that point they decided to take Mum off one of the chem drugs and she continued her treatment with one chemo and the immunotherapy.

The second scan report shows that the tumour has stayed the same, but that the lymph nodes are back along with a couple of new spots. The doctor organised a face to face appointment with her for today and has said he wants her to carry on with same treatment for 8 weeks, then another scan. If no improvement she may have to have radiotherapy and maybe different chemo. He has said he’s happy to meet me if I have any questions and to explain what’s happening to the cancer. Although the cancer has got worse in the lymph’s he said he was not too concerned.

I am so worried that this is a really bad sign. I also do not understand why they took one of the chemo drugs away when she had had such a positive response. Surely if the triple plan was working, you'd continue it? Also why wait 8 weeks of the same treatment when it’s not working? Does the mention of radiotherapy mean things are not looking positive any more?

Can any one offer me any advise or positivity.

May thanks

Sarah

[simlut]

I think it’s to do with the toxicity of the chemotherapy drug that they stop it. It would start damaging the body at the dose it’s given at and how many times it’s infused.It’s a constant worry isn’t it. My dads stage 4 and he’s having his 2nd cycle of Carboplatin and Paclitaxel and Pembrolizumab today. I’m terrified it won’t work.

I hope your moms maintenance treatment stops the cancer. If there is change radiotherapy will destroy the cancer it targets.

Sending big hugs xxx

[JanetteR57]

Hello Sarah, I understand your concern - stage 3 nsclc is one where often clinical experts differ in their approach of the order, the timing or dose of the multimodality treatments they offer. Please try not to read anything into the changes at this stage - radiotherapy is used to great success in nsclc including to remove lesions elsewhere that may have spread and is highly effect. Patients respond differently to treatments and lymph nodes respond also to inflammation so not only cancer which may be why her clinician is not too concerned. As he's offered to speak to you I'd take him up on this so you can ask specific questions about her. For many years lung cancer has been treated more on a 'personalised' approach dependent on many factors - such as the specific biological characteristics of the tumour/s and any specific biomarkers that there be an actionable treatment. Covid 19 has also changed some of the treatments on offer and duration with many who would usually have chemo having this swapped for immunotherapy or targeted therapies in different timings/strengths than standard care. Some of the chemo treatments affect people more harshly than others so he will be responding to your mum's response in changing the current treatment. I'm sure he'll be able to answer your questions and even if people answer on here, often no two patients are the same so much better to have the details from the clinical team treating the patient. You may find more information to help you on the trusted website Roy Castle lung cancer foundation which is regularly updated by clinicians and reviewed by a patient panel. there is also information on the site about some of the changes during covid that may explain further. good luck to you both. roycastle.org/about-lung-ca...

[RoyCastleHelpline Partner Ask the Nurse Roy Castle]

Hi,Janette R57 has given you good advice and nowadays each persons management is very individualised. There is some information available at

roycastle.org/help-and-supp... which may be of interest.

If you have any specific concerns always remember the lung cancer nurse specialist (LCNS) attached to the team looking after your mum and can be contacted in between scheduled hospital visits.The LCNS knows your mum's medical history and is valuable contact.

Also, if you would like to speak to one of the helpline nurses at the Roy Castle Foundation please don’t hesitate to call us on 0800 358 7200 (option2). We are available from 9.00 am-5.00 pm Monday -Thursday and 9.00 am-4.00 pm Fridays.

Kind regards,

All the helpline support team.

[flatterycat]

Thank you for your responses everyone. I’m going along with Mum to meet the doctor next week. I have some questions but if anyone can suggest anything that might be good to ask then that would be great.