How soon did your treatment start?

[DrBee]

Hi again friends. Now that we have the path report - adenocarcinoma - and staging should happen tomorrow and Thursday with MRI and PET, followed by our first oncologist appointment Thursday afternoon, I'm really eager to know how soon your treatment started and how soon you started to see effects. Honestly hubby is going kind of crazy with the coughing here, even though the codeine cough syrup does bring some relief. It knocks him out so much that he can only take at night.  He thinks he feels worse every day and he can only control cough if he doesn't move around, so says he feels like he's wasting away.  Last month we were doing 40 mile bike rides so this is really hard on both of us. Initial serum testing revealed none of the six most common mutations. I realize some of this will depend on test  results but any ideas would be hugely helpful. 

 

With gratitude,

Bethany 

[LexieCat]

Bethany, I can't really speak to personal experience with drug therapy, since I didn't have any.  But I did want to note that just because he doesn't have a targetable mutation at this point doesn't mean there aren't plenty of treatment options.  Not everyone has that much difficulty with chemo, and immunotherapy, sometimes used with or without chemo, is another option.

Everyone seems to respond in a very individualized way to treatment, and it's really hard to judge, based on one person's experience, what another's will be like.  The good news is that all your testing seems to be getting done pretty fast.  The sooner that's all done, the sooner treatment can begin.

[DrBee]

8 minutes ago, LexieCat said:

Bethany, I can't really speak to personal experience with drug therapy, since I didn't have any.  But I did want to note that just because he doesn't have a targetable mutation at this point doesn't mean there aren't plenty of treatment options.  Not everyone has that much difficulty with chemo, and immunotherapy, sometimes used with or without chemo, is another option.

Everyone seems to respond in a very individualized way to treatment, and it's really hard to judge, based on one person's experience, what another's will be like.  The good news is that all your testing seems to be getting done pretty fast.  The sooner that's all done, the sooner treatment can begin.

LexieCat, can I just hire you full time to talk me down? You're so right.... I was getting caught up in my disappointment, and tired after and a long day of miscommunication about results. Forgot about immunotherapy too. Boundless gratitude.

[Judy M.]

Lexie does have a gift for that. But don't hire her because the rest of us need her too. And she'd just get fired anyway for calling in sick to go to concerts. 

Judy M. 

[LexieCat]

Dang, I ran out of "likes" for today, but the two of you cracked me up.

If I'm hard to get hold of from tomorrow-Sunday, it's because I've got two concerts AND (Wait For It)--HAMILTON in NYC for my birthday!

[DrBee]

7 minutes ago, LexieCat said:

Dang, I ran out of "likes" for today, but the two of you cracked me up.

If I'm hard to get hold of from tomorrow-Sunday, it's because I've got two concerts AND (Wait For It)--HAMILTON in NYC for my birthday!

Searching in vain for the "jealous" icon. Aaah! Did I mention I'm a political scientist?!?! Enjoy!!!! (And happy birthday, LexieLioness! :))

[Cheryncp123]

Bethany, you will find that each of us has a different answer to your question, how long before you started treatment. For me it was 8 weeks from the time of diagnosis before I started treatment. I am on a targeted therapy drug because I have a specific gene mutation. Again everyone will have different experiences with their treatment but for me I have had very few side effects and have responded exceptionally well with my treatment. I pray for the same for your husband.

[Steff]

Bethany,

You may want to look into Tessalon Perles - a prescription cough suppressant.  My mom took them while she had a stent in her trachea that made her cough like crazy.  It helped quite a bit and I don't recall it making her sleepy.

As far as treatment goes, my mom did not have her first round of treatment until 4-5 weeks after her lobectomy (3 months after diagnosis). As mentioned above, everyone is different.  She had to wait so long because she was taking RA meds and they had to be out of her system before she started surgery.  For her recurrence, she began treatment a week or two after all tests came back except for PET.  

Side effects (EVERYONE IS DIFFERENT) - the first time, my mom had platinum based chemo and radiation weekly.  She felt pretty good throughout the entire treatment, just the typical lack of energy, but also really bad acid reflux that was controlled by a cocktail of meds.   For her recurrence, she had carbo+alimta and Keytruda (immunotherapy) every 3 weeks.  First session was fine, second session she started having typical side effects from chemo.  Even though the second bout of chemo was much tougher on her, she made it through with minimal help from me all the while continuing to be the main caregiver for my dad who is disabled.  

Now she is just on Keytruda and does okay despite shortness of breath which may or may not be caused by Keytruda.  The only other side effect is itchy skin which she is using an over the counter excema cream that helps a bit.

Don't know if any of this helps, but thought I'd share.

Take Care,

Steff

[DrBee]

1 hour ago, Steff said:

Bethany,

You may want to look into Tessalon Perles - a prescription cough suppressant.  My mom took them while she had a stent in her trachea that made her cough like crazy.  It helped quite a bit and I don't recall it making her sleepy.

As far as treatment goes, my mom did not have her first round of treatment until 4-5 weeks after her lobectomy (3 months after diagnosis). As mentioned above, everyone is different.  She had to wait so long because she was taking RA meds and they had to be out of her system before she started surgery.  For her recurrence, she began treatment a week or two after all tests came back except for PET.  

Side effects (EVERYONE IS DIFFERENT) - the first time, my mom had platinum based chemo and radiation weekly.  She felt pretty good throughout the entire treatment, just the typical lack of energy, but also really bad acid reflux that was controlled by a cocktail of meds.   For her recurrence, she had carbo+alimta and Keytruda (immunotherapy) every 3 weeks.  First session was fine, second session she started having typical side effects from chemo.  Even though the second bout of chemo was much tougher on her, she made it through with minimal help from me all the while continuing to be the main caregiver for my dad who is disabled.  

Now she is just on Keytruda and does okay despite shortness of breath which may or may not be caused by Keytruda.  The only other side effect is itchy skin which she is using an over the counter excema cream that helps a bit.

Don't know if any of this helps, but thought I'd share.

Take Care,

Steff

Steff, apparently I can't add any more likes today (dislike! :)), but wanted to thank you so much for  being one of the first to address this question, and also for the Perles suggestion. (Unfortunately we tried these starting last week and they really didn't help at all. But they must work for some because I see they're very highly recommended. Maybe once we get some tumor shrinkage they'll  have more of a chance to work!)

I'm hugely grateful for your sharing your mom's experience! Since we won't be having surgery anytime soon I'm hoping that some of the rest of it can start quite quickly. This might seem really silly but we are both outdoors people and I think when he is able to get back out into nature, even for short walks, without feeling like he's about to cough his head off, it'll be hugely therapeutic for him. (and we live in Chicago so we don't have unlimited months for doing that!)

 I'm so impressed that your mom has been able to be a help to your dad this entire time. Lou is also definitely a caretaker so I think he'll feel much more himself once he's able to do some of that.:) 

May I ask how long ago your mom was diagnosed?

 Thank you again for the helpful response, Steff!

❤️ Bethany

 

[DrBee]

2 hours ago, Cheryncp123 said:

Bethany, you will find that each of us has a different answer to your question, how long before you started treatment. For me it was 8 weeks from the time of diagnosis before I started treatment. I am on a targeted therapy drug because I have a specific gene mutation. Again everyone will have different experiences with their treatment but for me I have had very few side effects and have responded exceptionally well with my treatment. I pray for the same for your husband.

Cheryncp123, thank you so much for your answer! I apparently need to be more judicious with my use of likes because apparently I'm out for the day! Although each person is different, it's really helpful to hear each individual experience because It's starting to give me a sense of what the range looks like. Extremely helpful for adjusting my own expectations and also planning for the future, especially for fall semester. ❤️

8 weeks seems like longer than many people's wait.  Would you be willing to share some of the reasons for that time period?

Thank you again!

[Steff]

Bethany,

My mom was diagnosed in November 2015, NSCLC adenocarcinoma stage 3A.  She had a right, upper lobectomy in January 2016 and completed 12 weeks of chemo and radiation in April 2016.  Her supposed "recurrence" (we think it was there all along) was found in July 2017 and she's been on immunotherapy since.  Life is different, but life is good!  

[Tom Galli]

Bethany,

From your posts, my trachea stents, and reflections on anatomy, might your husband’s tumor be impinging on his trachea?  If that is the case, I experienced severe coughing from stents places in my trachea and nothing but removal mitigated the coughing. 

If so, I hope the tumor can be hit with precision radiation (IMRT, SBRT, or Proton Therapy’s). That should zap the tumor and remove the source of irritation. 

But most importantly, my stent also caused my appetite to wane. It pressed against my esophagus making eating difficult. I hope he is eating very well. If not, start force-filling him with calories (hint — lots of ice cream). He’ll need all the calories he can muster when treatment starts. 

Stay the course. 

Tom

[DrBee]

On 8/1/2018 at 10:45 AM, Steff said:

Bethany,

My mom was diagnosed in November 2015, NSCLC adenocarcinoma stage 3A.  She had a right, upper lobectomy in January 2016 and completed 12 weeks of chemo and radiation in April 2016.  Her supposed "recurrence" (we think it was there all along) was found in July 2017 and she's been on immunotherapy since.  Life is different, but life is good!  

Steff, oh my goodness, how did I JUST see this? I am SO inspired by your mom's story (and by you!)

[DrBee]

On 8/1/2018 at 2:04 PM, Tom Galli said:

Bethany,

From your posts, my trachea stents, and reflections on anatomy, might your husband’s tumor be impinging on his trachea?  If that is the case, I experienced severe coughing from stents places in my trachea and nothing but removal mitigated the coughing. 

If so, I hope the tumor can be hit with precision radiation (IMRT, SBRT, or Proton Therapy’s). That should zap the tumor and remove the source of irritation. 

But most importantly, my stent also caused my appetite to wane. It pressed against my esophagus making eating difficult. I hope he is eating very well. If not, start force-filling him with calories (hint — lots of ice cream). He’ll need all the calories he can muster when treatment starts. 

Stay the course. 

Tom

Tom, this is an excellent question and I really, REALLY wish I had seen it before our onco appt yesterday. I will for sure send a message asking, as the cough is really, REALLY bothering him right now. As i posted elsewhere, I am super confused about why neither surgery nor precision radiation (or radiation period) is seen as an option. We basically have the one mass (I believe 9x6x4) in the upper R lobe, and then all these affected lymph nodes.  Since lymph nodes seem such a common place for things to spread, I am surprised if it is the case that we do not have more ways to treat them! 

And yes, the eating has been difficult and I am working hard to keep his weight up (as is he). He's lost about 5 lbs in the last month - not a lot, but he's only 148 and 5'11" so doesn't have a lot of room to lose more.

With gratitude, and continuing to try not to panic,

Bethany

[DrBee]

As an update here, given the title of the post, I thought I'd note what I've said elsewhere: chemo starts next week! Cannot be soon enough for us! But still really confused about why surgeon seemed to think that surgery and radiation not options for us, even further down the line. 

[Cheryncp123]

If you were diagnosed at stage 4, surgery is not usually an option, as far as radiation, unless the tumor is too close to a vital organ (heart) to radiate without causing more damage, then I don't know why that would not be an option. That is a good question for your doctor.

[DrBee]

Damn, out of "likes" for today AGAIN! Thanks, Cheryncp123. I agree with you!  Thanks to your and Tom's encouragement I have just sent a message asking EXACTLY this!