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Finally have our Plan..but kinda scared


TMC

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Ok, so after last visit with surgeon and a 2nd CT Scan with contrast we were told "no go" for surgery at this time and referred us back to the Medical Oncologist we had met with earlier.  So we met with him today and instead of stage 2b they changed it to IIIa because of size I believe and maybe some other stuff.  Another small nodule showed up in the second scan also, but he said it's too small to even biopsy so they are just gonna watch it unless we can still do surgery later and then it will just be removed with the lobe.

So the options we were given were:   Since the lymph nodes they tested came back negative he still could possibly have surgery.  But he would have to have aggressive chemo & radiation and then rescan in 5 weeks..if the tumor shrinks and they can confirm it is not attached to the SVC then they would do surgery for lobe removal or possibly whole lung if they can't do the sleeve resection. And then no more treatments after surgery and just scans to make sure it hasn't returned.

2nd option was if we didn't want surgery at all we could go with a less aggressive chemo and radiation and then immunotherapy and just treat it that way...with no surgery.

My husband has decided he wants the surgery. IF the chemo & radiation shrink it and we can do the surgery that's it for now...IF after five weeks we do the re-scan and it's not shrunk OR it's attached, then surgery is off the table and we finish the remaining chemo & radiation and the 1 year of immunotherapy and I guess just go from there?

The chemo they are starting on March 30th is Cisplatin + Etoposide.  The side effects sound SCARY! Especially the hearing because he already has hearing loss and ringing in the ears due to his job of 30 years..but the doc says this is our only option if we want to try surgery...so he wants to try..

SO....has anyone had this combo and can you tell me what things I might need to start searching for to help with side effects?  I feel like we are in an episode of the walking dead at this pointwith the coronavirus and since we only have 2 weeks before chemo starts I want to try find any and all things I might need to help him with his chemo and radiation side effects so ALL ADVICE IS WELCOME!!   I might be having to pull a Rick and try some bartering to get the things we need! (Ok, I'm kidding..sort of) 😁

I do welcome any advice anyone can give us to prepare for journey coming up in the next two weeks.

Thank you all and hope everyone is doing well during these trying times!  Looking forward to reading some responses.

T

 

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TMC,

Your husband is on the same treatment path that I experienced, but my drugs were Taxol and Carboplatin.  The pre-surgical radiation and chemotherapy did in fact shrink my tumor and I had a successful surgery. I was well on the way to recovery till a well meaning neighborhood family visited and I caught a cold that morphed into pneumonia and treatment ruptured sutures and surgical mayhem resulted. So, my first suggestion is to wall yourself off from school aged children during pre-surgical chemo and radiation and surgery until well recovered. Here are some tips and tricks for infused chemotherapy.

I didn't have Cisplatin and Etoposide but everyone reacts differently to chemotherapy. For example joint pain was not a common side effect with my drugs but it was the most troubling one for me. The most important recommendation is to have a port installed to minimize the number of IV sticks he will experience.

Stay the course.

Tom

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Yes, Tom we are waiting for them to call us with the appointment to install the port.  We are certainly staying HOPEFUL this will indeed do the trick and he will be able to have surgery to remove the cancer.  Hoping they can do Lobe removal but are aware it may be whole lung but we are good with that too if it means removing all the cancer :)

Thank you for your response.

T

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TMC,

I’ve lived an active life with about 30% of total lung capacity.  I can’t run a marathon but few men approaching 70 can.

You’ll not regret the port decision.  

Stay the course,

Tom

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TMC

One thing about that port. It is a tad more of a procedure than I had anticipated (nothing scary) and it was very tender for a couple of weeks. I was glad I still had some pain meds from surgery.  My advice is get it done as far ahead of Chemo as you can.  It does sting when they insert the IV stuff but everyone says it goes away. Regardless..much better than hunting for a vein.

Peace

Tom

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They got us scheduled for March 24 to insert port and we start chemo March 30.  Today he his getting his CT scan to start mapping him for his radiation.  At first we felt like things were moving so slowly but actually now that I'm looking at my calendar of all we have done in the last 40 days things have been moving at quite a quick pace! 

Just ready to start kicking this cancer's butt!

T

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Please know that you can get a numbing lidocaine cream to put on your port an hour before access. Then it is a relatively easy procedure 

sure chemo side effects sound scary but everyone is different and you certainly won’t get all side effects listed. Your team will load you up with anti nausea meds and steroids before treatment. Side effects should be fairly manageable 

Good luck and let us know how it goes 

 

 

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