Husband restarting Chemo

[BeachGirl]

Hi to everybody! Just needing some pick me up in this long game of NSCLC. Husband was diagnosed in April 2010, stage IV  squamous NCSLC. Tumor in RUL & LLL. 4 cycles of cisplatin & gemzar. surgery 2011 to remove RUL, next lobectomy to remove LLL in March 2011. All good. 2013. Nodule appears in right lung. 4 zaps of SRS. 2017 another nodule in the right, SRS again. All good thereafter. Now, April 2020. CT of chest showed tops of kidneys. Weird. CT of abdomen ordered. Surprise. Bilateral masses on kidneys. Biopsy performed. First one negative, 2nd biopsy squamous cell, just like lung and some lymph nodes “glowed” on the PET scan,  between 1.7 & 4.9 SUV,  some uptake in kidneys, no SUV value. 

So, here we are 10 good years later and starting chemo again. Same stuff cisplatin & gemzar. Same schedule.  Cisplatin day 1, Gemzar days 1&8, rest, repeat. Waiting on molecular studies of tissue samples. I’m just overwhelmed starting over, especially when there isn’t a set number Of cycles To count down to a supposed finish line. PET scan after 3-4 cycles to see if it’s working. It did work well 10 years ago, so we’re optimistic. It’s the no international travel or vacations while on chemo cycles that just really brought me down because they aren’t saying that chemo will ever end.  Never mind COVID And it’s effects on travel. Just nice to have something to look forward. As my husband says, it’s just clear air turbulence, a bump in the road. I’m the worrier of the household. Hahaha. Thanks for letting me vent. 
cheers to all the fighters!
Tracy

[MarieE]

Hi Tracy. I'm the worrier of the family also, so I know how hard it is. Our saga has not been going on nearly as long, but after surgery last year we thought the worst was behind us. We had two big international trips planned that we've had to cancel for this year due to the double whammy of COVID with the cancer recurrence on top of it, and we also own a second home outside the country that we can't even get to at this point even if we wanted to. My husband's cancer is squamous also, and he has a MET mutation so he just started on Tabrecta a couple of weeks ago. We were told that as long as he tolerates it and it's effective, he could be on it for years. Hang in there and vent away! I know it helps having someplace like this where we can come for support from others who understand.

[BridgetO]

Hi Tracy and welcome. Your husband has lived for 10 years at stage 4! Wow! No reason he shouldn't go on living. I understand wanting to travel, Prior to my lung cancer,, I had a rare gynecologic cancer that was stage 3. I was in a support group where I met several women who had stage 4 ovarian caner and who were having chemo for recurrence.Three women were particularly inspiring to me because of the way they were choosing to live their lives, including travel. One went to China in between infusions and she also continued to ride her horse. Another said she decided to travel because, as she said " If I'm going to fight for my life, it has to be a life worth living". She went on a cruise to the Galapagos, got sick and had to be airlifted out.  She said "Oh well, I had good travel insurance."  A few months later, she went on a cruise to the Arctic where she took great photos of polar bears.

I don't want to recommend going against doctors recommendations, but on the other hand we each need to get advice and then decide what is important to us and what risks are tolerable to give us  a good  quality of life.  This is all the more so if we have a disease that is considered  'terminal"-- whatever that means.  Having known these traveling women has made me much less scared of cancer. 

Hang in there!

Bridget O

 

[APT]

Goodevening,

My mom was diagnosed with stage 4 lung cancer 3 months ago, she just had a biopsy yesterday ((thought that was a bit late)), her oncologist just changed her treatment too Cisplatin and Gemzar, im hoping it proves effective.

 

My main question i wanted to ask about, since I stumbled on this thread and noticed your husband having surgery with a lobectomy, I wanted to know what was a time frame as to where your oncologists suggested having surgery (lobectomy) is it 2, 3, 4 months down the road. Or even longer? Im curious to know because my moms lung cancer is still isolated in her right lung, and im wanting her to have a lobectomy performed but her oncologist hasn't even suggested surgery at all, not now, or even down the road. Her oncologist is currently just keeping her on a course of chemotherapy. Will we possibly get the discussion of surgery in the future? Is this a normal route for oncologist to wait to see if chemotherapy is effective, then perform surgery? I just want to know a time frame as to when surgery would be suggested by an oncologist?

[BridgetO]

Hi APT,

Surgery is commonly done for Stage 1 lung cancers and sometimes for stage 2. When it's done, it's usually before other treatment. I think surgery iis uncommon for stage 3 or 4. I suggest your mom ask the oncologist for an answer to the surgery question, but I would be surprised if it's is an option. I've been surprised before though, so I think it's worth asking. There are others on this forum who may have more information about the surgery issue. And lung cancer treatment is evolving very rapidly in the past few years.

I wish all the best for you and your mom.

Bridget O

 

[BeachGirl]

Hi APT!  when my husband was first diagnosed in 2010 we went to to our closest comprehensive cancer center, Moffitt Cancer Center in Tampa, FL. We saw the medical oncologist & talked about options, surgery being one of them, even though we were stage 4. My husband was 55 at the time & healthy otherwise. Met with first surgeon May 2010. That surgeon said he would do a mediastinoscopy, which biopsies the lympH node and if the lymph node was positive he would not do the lobectomoy. 
Lymph node was positive so that surgery was discontinued.
We then went back to medical oncologist & started on chemo. Did 4 cycles of the cisplatin & gemzar, which shrank the tumors. We were then sent to see the radiation oncologist. That doctor said she wanted us to go back to Moffitt and see the Thoracic surgeon again, before she did radiation. We did. We saw a different surgeon. That surgeon said he would remove the tumor & surrounding lymph nodes in the right lung and in 6 weeks he would take out the tumor in the left lung and surrounding lymph nodes. I asked why he would when the first surgeon would not. His answer was his philosophy was different regarding positive lymph nodes, and in an implied manner ,that he was more experienced & skilled surgeon.  And both surgeries were done. So even though we were at stage 4 surgery was available. Remember, second & even third opinions are always your right & there’s no shame in asking for them. 
Best to you and your mom

Tracy

[GaryG]

Hi Tracy: I am very surprised at what I just read. I go to Moffitt. I was told that treatment decisions were made by a board that meets each week after reviewing the Surgical Pathology Final Report and the Molecular Pathology Final Report.  Of course surgeries depend on the size and placement of the tumor but still 2 surgeons from the same department should come to the same conclusion. Maybe the chemo shrank the tumor enough to allow for surgery to be done. Glad I read your post because now I will ask questions. Thank you

Gary

[BeachGirl]

Hi Gary: Of course this was all 9 years ago. We were surprised too, also, the first surgeon had left Moffitt so perhaps that played into the decision as well as the tumor shrinkage From chemo. I know that his case was reviewed by “the board”. All I know is first surgeon in May 2010 it was a no go, but in January 2011 second surgeon it was a go. Different board, change in “rules”, tumor shrinkage, or we got lucky. Not sure we’ll know why, but so very fortunate the past 9 years. Now we start a new battle where surgery is definitely off the table. 
Here’s to getting the answers to your questions. 
Tracy
 

[GaryG]

Tracy: Best of luck going forward. A lot has changed and more options are available. Also Moffit is ranked No 8 in the nation so they must know their craft.

Thank you for clarifying.

Gary

[Lisa Haines]

On 7/11/2020 at 2:39 PM, BeachGirl said:

Hi APT!  when my husband was first diagnosed in 2010 we went to to our closest comprehensive cancer center, Moffitt Cancer Center in Tampa, FL. We saw the medical oncologist & talked about options, surgery being one of them, even though we were stage 4. My husband was 55 at the time & healthy otherwise. Met with first surgeon May 2010. That surgeon said he would do a mediastinoscopy, which biopsies the lympH node and if the lymph node was positive he would not do the lobectomoy. 
Lymph node was positive so that surgery was discontinued.
We then went back to medical oncologist & started on chemo. Did 4 cycles of the cisplatin & gemzar, which shrank the tumors. We were then sent to see the radiation oncologist. That doctor said she wanted us to go back to Moffitt and see the Thoracic surgeon again, before she did radiation. We did. We saw a different surgeon. That surgeon said he would remove the tumor & surrounding lymph nodes in the right lung and in 6 weeks he would take out the tumor in the left lung and surrounding lymph nodes. I asked why he would when the first surgeon would not. His answer was his philosophy was different regarding positive lymph nodes, and in an implied manner ,that he was more experienced & skilled surgeon.  And both surgeries were done. So even though we were at stage 4 surgery was available. Remember, second & even third opinions are always your right & there’s no shame in asking for them. 
Best to you and your mom

Tracy

Tracy,

  This is very interesting and I'm so surprised to read that a Stage IV patent was able to have surgery.  I've always been under the impression that Stage IV was "NOT" considered operable.  This is the first time I recall anyone having surgery at Stage IV!   WOW!!  I was Stage IV myself and went for three different opinion as was told by everyone that I was not a surgical candidate and I always thought it was because of my Stage.   Maybe it's was more to do with the location of my tumors and the fact that I also had a brain met?

Thanks for sharing, I'm totally shocked!   

[APT]

Thank you all for the clarification. This whole process has left me with so many questions, and above all tremendous anxiety. I want my mom to have the best outcome. So far she's doing okay almost 4 months into diagnosis and chemo. Her oncologist has her only on a chemo regimen. Radiation therapy and or surgery hasn't even been introduced whatsoever. So I'm hoping and praying that her oncologist is keeping her on the right path of treatment.