New Here

[Aus]

Hi everyone!  I am new on here and trying to work through my dad’s stage IV cancer treatment.  He was diagnosed in February 2021 at age 62 with stage IIIB adenocarcinoma.  He commenced 6 weeks of radiation and 5 weeks of chemo (carboplatin and paclitaxel).  Scans in August revealed 5 small brain mets.  We were advised that he was not a candidate for stereotactic radiosurgery and he underwent WBRT.  He commenced immunotherapy (Opdivo/nivolumab) in late August and had 9 sessions.  Subsequently they found a spot in his shoulder and hip which were treated with radiation.  His oncologist determined that the immunotherapy was not effective given the additional mets and ceased immunotherapy.  He was then placed on platinum chemotherapy which has now also ceased as he developed a pleural effusion in April.  He has been sent home and advised that further treatment options would be futile.

I am seeking to understand whether there is anything else we should be exploring with the medical team.  Has anyone switched immunotherapies and found that one worked better than another (eg from Opdivo to Keytruda) or are they all the same?  

He has tested negative for EGFR, KIT, KRAS AND NRAS.  We have been told he is also ROS1 negative, but I haven’t seen a record of this with his paperwork.  His PDL1 is 10% (as I understand it). Are all mutations generally tested for or do they need to be specifically requested?  

At last scan, most of his sports were stable or show minor progression, but for one spot on the brain which has grown.

Any advice would be greatly appreciated.  I have been so grateful to find this forum which is incredibly informative and helpful.  We are in Australia and I am conscious that treatment protocols may be somewhat different.  

Many thanks.

[Tom Galli]

Aus,

Welcome here and sorry to learn of you father's diagnosis and treatment difficulties.

To your questions: has anyone switched immunotherapies? Yes but I'm not sure I could characterize the results. Are all mutations generally tested for? Again, in the US yes. And from your description, with your dad's PD-L1 expression and lack of targeted therapy markers, his immunotherapy treatment was an appropriate approach. 

My advice? I'm mindful of your report on WBRT and the continued activity of the brain met. That is concerning. If it were me, I'd explore if precision radiation techniques (SBRT. IMRT, CyberKnife and others) might zap that uncooperative met, but he's already had a significant amount of brain radiation so that may not be possible. Moreover, there is your statement about minor progression in other parts of your dad's body. Thinking outside the box, you might find a radiation oncologist who could be convinced to perform "multi-focal" precision radiation on all active mets to take them off the table. In the US, that treatment would be "outside the range of standard of care" but it is a possible avenue. I'm not sure your medical treatment protocol would allow that kind of treatment. Perhaps you might suggest that precision radiation be used as palliative care to avoid restrictions on curative methods in your medical system. I am partial to radiation as a treatment method. It was my "last chance" method and it worked!

I wish I had better information.

Stay the course.

Tom

[BridgetO]

hi Aus and welcome here. I'm sorry to hear about your dad's diagnosis and problems with treatments. I'm wondering whether any clinical trials are being done in Australia. If so, it might be worthwhile to find out if there are any he'd qualiify for. 

Hang in there,

Bridget O

[Aus]

Thank you so much for taking the time to respond Tom and Bridget.  I really appreciate it.

We have an appointment with the radiation oncologist next week and hope that he will consider further treatment.  Clinical trials were discussed as a possibility early on in his treatment, but we are advised that is no longer feasible.  I will be going along to the next appointment with his medical oncologist next week and hope to be able to explore options further.  

We have remained hopeful with every treatment since his diagnosis and the last few weeks in particular have been devastating with his medical team advising against further treatment.  

Thank you again.

 

 

[Phil s.]

Good evening,

   My name is Phil I am 62 y/o male. I was just recently diagnosed squamous cell carcinoma of the left lower lobe with a couple of lymph nodes. I will be starting my chemo in a week or so, I need to have head MRI before they start. I’d like to know what to expect on my first visit for chemo therapy? Honestly little scared about all this. I will have 6 hour chemo every 3 weeks after 3rd session then we will be discussing removing the mass in my lung. Any input would be greatly appreciated 

Thank you,

Phil

[Tom Galli]

Phil,

Welcome here.

In 2004, I was diagnoses with squamous cell, non small cell carcinoma, and my first treatment was chemotherapy paired with radiation. What was my experience? I've answered that questions so many times, I placed my response here.

Your first chemo session will likely be a long one and the nurse administering your therapy will (should) spend a great deal of time explaining side effects and mitigation methods. I was so nervous, I forgot the explanation. The first session might be a good time to bring a family member to be a "second set of ears". Depending on the infused drugs, you may be given prescriptions for medication used to minimize common side effects. Get that filled right away. Don't wait until you are experiencing symptoms to head to the pharmacy.

My most remembered complaint was IV insertion. I got stuck often and during my second and third lines of chemotherapy (line = a 3-week cycle of 6 infusions), my veins refused to cooperate. If you experience this problem, ask for a port. 

But, the best thing I can report about chemotherapy is you've found a place where you can ask answers and likely receive answers at say 3 am--here!

You are starting on a treatment that I had in 2004. I had nearly 3 years of constant treatment to eliminate my lung cancer. The most important message I have for you is if I can live, so can you.

Stay the course.

Tom

[Judy M2]

Hi Phil, I was diagnosed at Stage IIIB adenocarcinoma in October 2019. My tumor was also in my lower left lung with a few lymph nodes affected. I had 6x chemo (carboplatin and taxol) and 30x radiation before starting a targeted therapy. For me, radiation was harder than chemo. 

My oncologist insisted on a port, so I had that procedure before starting chemo. I still have it today and go for regular port flushes.

Chemo infusions are boring. Bring a blanket, reading material, ear buds, a beverage/water and snacks. I did a lot of e-book reading and napping during my infusions. 

Like Tom says, fill all your chemo prescriptions before starting, you never know if or when you'll need them. Also get some Miralax in case you experience constipation, which is very common. 

Although I was told I wouldn't lose my hair, I did and it took about a year for it to grow back. I also lost my eyelashes, and today they're still fragile. 

All my treatments have been successful, and I've had No Evidence of Disease since April 2021. I hope you get good results from your treatment.