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MarieE

Another newbie ... Still a bit in shock

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So glad all went well, MarieE. My husband had a pneumonectomy and I was amazed he was up and walking shortly after his surgery.

Home is definitely the best place. Sending so much love and well wishes to you and your husband. we are all here for you!

XX

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He’s been very active in the mornings the last couple of days, even doing some gardening and house cleaning, and then takes it easy in the afternoons and evenings. He tried just taking Aleve last night but didn’t sleep as well so he may need the Percocet for a couple more nights. Other than a bit of dull pain, numbness, and a bit of a cough, he is doing great! We will see the surgeon next on Monday and then follow up with the oncologist regarding next steps. His appetite seems to be coming back slowly but I bought him Boost (like Ensure, but better tasting I’m told) to drink if he’s not hungry. 

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Marie

I’m happy to hear about your husband’s progress. It sounds like you are doing the right things so keep up the good work and you’ll find him recovering very nicely. 

Lou

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25 minutes ago, Tom Galli said:

Marie,

I forgot to tell you. Keep him far away from school aged children. A chest cold at this stage is a nightmare!

Stay the course.

Tom

Good point. Thanks.

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So, we got the pathology results. Here's what we know so far in a nutshell: Tumor was 3.8 cm, squamous cell lung carcinoma; margins were negative (but it did sounds like there was a bit of a "but" in there); 4 of 17 lymph nodes tested positive; Stage is 2B; there will be follow up CT scans every 3 to 4 months for the first year, 4 to 6 months in the second year, and yearly after two years; chemo will likely be 4 cycles every three weeks (not sure exactly what that means yet); once the genetic test results come back the oncologist can supplement chemo with immunotherapy as appropriate.

I'm putting together a list of questions for the oncologist visit on November 4. Obviously, we need a lot more details about what the chemo will entail, but also will want to know about any travel considerations for over the holidays.

He continues to do great with recovery from the surgery.

 

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Marie,

Glad to hear the good surgical recovery news.

Chemo: your descriptions sounds like post surgical or adjuvant therapy, designed to sweep the blood and lymphatic systems of cancer cells. It really tamps down recurrence probability. Adjuvant therapy is normally a lower concentration than that given when chemo is the primary treatment. He may not even lose his hair. The 4 cycles (infusions) every three weeks is a pretty common treatment frequency.

As for holiday travel considerations, if it were me I would forgo holiday travel if it puts him at risk of contracting a cold or the flu or other illness going around.  Chemo will tamp down his white blood cell count and that will make him much more susceptible to illness. After my first surgery, a visit from a well intended neighbor with school aged children landed me in the emergency room with a fever of 105! That led to a year's worth of thoracic surgery mayhem. Moreover, if your travel involves aircraft, the cabin pressure altitude between 6 and 8,000 feet causes one's chest cavity to expand and may make incision scars roar in pain. I still have incision pain after every flight and my surgeries were in 2004! My lesson learned from thoracic surgery is isolation and avoidance of illness is the best policy.  I'd wait till a month to six weeks after his last infusion before resuming a social schedule.

The scan frequency is what one would expect post surgery. All forms of lung cancer are known for their recurrence. Here is some insight into squamous cell recurrence. It is 3 years old but unfortunately still valid.

Stay the course.

Tom

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Thanks, Tom. All of this is very helpful. All of you on this forum have been a godsend helping us to maneuver through everything. Seems like every day I learn a bit more and realize how much I still don’t know. 

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Hi everyone. So, tomorrow is three weeks out from surgery and he still has a cough and gets winded pretty easily, but I guess that's all to be expected. The pulmonologist is trying to get him approved for O2 with insurance since he still has a pneumothorax. We saw the oncologist today and are somewhat dismayed that chemo is sounding much more extensive than we initially had been led to believe. The oncologist recommended Carboplatin and Taxol at 3 week intervals over 4 months. Obviously, the timing is not ideal with holiday travel planned but we'll play all that by ear. I think we may want to see about a second opinion also as well as alternative treatments available, if any. The oncologist said the 5 year survival estimates right now, having had the surgery, are about 60% and chemo only adds another 10-15%. I think we are both left wondering if it's even worth going through all of that. Once again, it's a lot to absorb.

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Marie,

Surgical complication kept me from having post surgery chemotherapy. That started me down the path of 4 recurrences and 3 years of nightmarish treatment. So, if it were me, I'd have the chemo. A recurrence is not something you want to encounter.

Stay the course.

Tom

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Hi Marie,

Although I have not been a patient, I tend to agree with Tom.  My mom is on her 1st lung cancer recurrence after a lobectomy and follow-up chemo and radiation.  She was given the option of immunotherapy alone or immunotherapy and chemo combined.  The latter increased survival rates by 5-10%, for a total of about 50% survival rate.  My mom chose the latter and has been NED for over 1 year.  Your husband is looking at a combined 75% probability of survival, that is HUGE and sounds very hopeful!

I am sorry you guys are in the position to have to make these choices, but it will get easier.  

Take Care,

Steff

 

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Thanks. I think the biggest surprise for us today was the lack of any discussion of options. I find it hard to believe this is the singular course of action and I’m also hesitant to go forward aggressively while he is still recovering from surgery. I think at a minimum we need at least one other opinion from another specialist. 

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Marie,

You may find a lack of options because your husband's surgery with discovered lymph node involvement invokes a national standard of care. This form of care has been shown to be the most effective through trials and studies in remedying the presentation of your husband's lung cancer.  Care outside of the national standard bumps up against an insurance coverage problem.  Likely, insurance won't cover treatment cost. Ask the oncologist if his or her recommended treatment is in concert with a national standard of care. If so, you'll only have two choices (from any medical oncologist), accept the chemotherapy or decline the chemotherapy.

Stay the course.

Tom

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Marie,

When I had my lobectomy, 7 of 10 lymph nodes were bad. My next steps were chemo (Cisplatin and Alimta) - one dose every three weeks. I started chemo almost 4 weeks post-surgery. With my first recurrence, I had Carboplatin and Taxol with radiation. I'm not going to sugarcoat it - chemo stinks. But for me, it was the best option both after diagnosis and with the recurrence. 

Tom is also absolutely correct about trying to avoid getting sick as we head into cold and flu season. In early 2018, I had bronchitis and then the flu and broke two ribs coughing. From that point on, I did everything I could to avoid catching anything.

 

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Saw another oncologist today who recommended Cisplatin and Gemzar day 1 and Gemzar alone on day 8 for 4 cycles of 21 days. Downside is going in two weeks in a row and having only one week off vs. two, but she provided a much more thorough discussion of the various options and their side effects (and efficacy). We have one more opinion scheduled for Thursday and it was interesting talking to the nurse at this particular cancer center today as she was the first and only one to point out that they were still waiting for results from one of the genetic tests that looked promising so far. Whatever we choose to do, we will likely start the week of Thanksgiving due to some travel plans in the meantime.

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So, I guess this is all rolling along... We met with an oncologist today who was incredibly thorough and informative, and also pointed out that my husband tested positive for RET alterations so that may be important down the road. Unfortunately, he was two hours away, but he offered to review all of my husband's future scans in case anything develops. He's also leading a trial for one of the promising RET drugs.

So back to the current plan: Cisplatin and Gemzar for 4 cycles, wrapping up in early February. Still hoping to do a bit of travel over the holidays, but for now I have already cancelled what we had in place for over Christmas. This is certainly not the way we expected to spend the holidays, but it's more important to be healthy for the long-term.

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You’ll get back to travel soon enough.  It’s better to get the treatments out of the way now.  There are some on this site who plan trips before each CT Scan to avoid the anxiety that inevitably builds at that time.   

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21 minutes ago, Curt said:

You’ll get back to travel soon enough.  It’s better to get the treatments out of the way now.  There are some on this site who plan trips before each CT Scan to avoid the anxiety that inevitably builds at that time.   

Agree, and what a great idea about scheduling a trip prior to each scan! What a great idea - appreciate you passing it along. 

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Hi MarieE,

Having never had chemo; I don't have much to add, but I'm glad that you have a game plan for your husband and will be sending up good thoughts and prayers for you both.

 

Lou

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