Treatment recommendations of Alimta and platinum

[Mona123]

So, my husband has stage 4 NSCLC, diagnosed 2 months ago.  We have been seeing local oncologist, as well as just finished consultation with Moffit Cancer Center, where we were able to access a team of docs that only deal with NSCLC.   We were hoping that some targeted markers would be identified, but sadly, there were none.

I have read lots about this cancer, and I do have a clinical background as a RN, but cancer nursing was not my specialty, so getting all the info I can.

My concern is that my husband has other medical issues, diabetes, heart bypass, kidney disease, and pulmonary fibrosis.

So, he was not a candidate for radiation or surgical intervention.  So we are left with broad chemo, lots of potential side effects, and from the meta studies that I am reading, I don't see that treatment adds any significant amount of time to his prognosis.  What the hell?   I need to hear from people living this.  My husband is 73, and I am crushed with this diagnosis.  He never smoked, has not had any alcohol since he was in his 20's,  and we were blindsided by this diagnosis ( who isn't?)

anyone on Alimta?  Of course, the doctor says this is a mild chemo, seriously, how can they even say this with a straight face???  

With mets to bone and lymph, he is already on pain management medications.

What has been the experience of others?

 

[Rower Michelle]

I’m sorry about your husband and now you’re dealing with the shock and awe literature review.  Here’s a little bit of light, most of the journals are out of date by the time they hit publication, that’s how fast the lung cancer scene is changing today.  
 

One of my friends has been in Altima now for three years and another just passed the one year mark (as her fourth line of treatment).  It’s possible for Altimpta to be effective.  You might want to engage the palliative care team to manage any potential side effects.  
 

Two important pieces of information, report everything to the medical team no matter how small.  It’s a mindset shift, not complaining but informing.  Secondly, Dr Google is not our friend.  Ever.  You might want to check out Facebook for an Alimpta page too.  
 

Sorry you have to be here but glad you found us. 
Michelle

[LexieCat]

Hi, Mona, and welcome. Lots of us here have been on the "triplet" of Carboplatin, Alimta, and Keytruda. Most of us had relatively few, and mostly mild, side effects. I had a bit of fatigue (which typically hit hard around day four of each cycle, then let up), along with a bit of "brain fog" (which wasn't too bad, but it did interfere with my mentally taxing job). 

I also lack any targetable mutations. I responded GREAT to the main chemo/immunotherapy, but after I went on maintenance therapy (Alimta and Keytruda alone), my cancer started to progress. I joined a clinical trial then for a treatment called TIL therapy (which I know they've done at Moffitt), and so far that seems to be doing the trick. My first scans were terrific and this treatment is designed to be a one-time treatment, so we shall see.

The bottom line, though, is that you want to have him treated at a top medical center so his other medical issues can be appropriately treated. You also might want to consult with a radiation oncologist to see if radiation might be appropriate for the bone mets--the radiation can often provide fast pain relief. Precision radiation might be available as palliative treatment, even if it can't be used on the tumor(s) in the chest.

[Mona123]

LexieCat, thank you for your response.  My husband also has pulmonary fibrosis, so Keytruda is off the table because of the inflammatory response.  we did see a radiation oncologist regarding lower back and hip discomfort, but because he has had gastric surgery in the past and his pain right now is controlled with medication, he is holding back.  the radiation oncologist told us there was no reason to do the palliative treatment until his pain was not well controlled, so we will wait on this.  Even with targeted precision radiation, the scatter could further worsen his GI symptoms.  sigh.  

Moffit is overseeing his care, we will get treatments in our local area by our generalist oncologist.   We can go there if we choose, but will start off trying to manage closer to home with the support of the experts from the NSCLC center at Moffit.  Seems like the best of both worlds at this point.

so good to hear that you had mild side effects.  

Good suggestion about informing versus complaining, I will keep a log of any changes.  

thank you again for taking the time to share your experience with me. 

[Mona123]

Michelle, I appreciate your response,and your positivity.  Needed right now.  I get it about the literature being outdated, just trying to be sure we are informed, and I have found that the doctors are not great about having frank discussions with their patients.    Today we get labs, next week local oncologist discussion of recommendations, and Al will make his treatment decision based on all of this information.

I am glad to have found this forum!

[Rower Michelle]

You’re right that some of the docs aren’t great at having Frank conversations so it’s up to us to “train” them up.  What I usually do is submit a list of questions and agenda via email about two days prior of the appointment.  This gives the doc a little bit of time to formulate answers.  It’s worked really well for me.  

[Tom Galli]

Mona,

I don't have experience with Altima but in the course of many treatments, I found myself with declining options. I was diagnosed in February 2004, had a year's worth of surgical nightmares, then three more years of treatment to address a total of 5 recurrences. Of course my treatments were well before the introduction of targeted therapy and immunotherapy. Both are a godsend.

You are doing all the right things. I particularly endorse Michelle's method of "training" her physicians. As an RN, you know the drill. Today, doctors are on a 15-minute clock so submitting questions in writing in advance of a consultation is sound advice. We might also field some of your questions. While not physicians, we are an experienced group who collectively are well versed about treatments and outcomes. So post up your questions here. Some post excerpts of a scan report and many of us can interpert radiologist lingua franca. 

As for survival statistics, consider this.

Stay the course.

Tom

[Mona123]

Tom Galli, thank you for your response.   I will continue to use this forum as my husband and I take this journey.  I am a positive person, and have for several years been one to use meditation, affirmations, exercise and music to soothe the life bumps that appear.  I was certainly hoping that his Guardant testing would yield a result for a targeted therapy, but not the case, so off we go into the realms of a more generalized therapy option.

I have always told my patients that statistics are just a bunch of abnormal results taken and reported on the Bell curve...lol, and you have to read these numbers with caution.  I have gotten a bit crazy about looking at meta analysis studies, as well as the chemo drug analysis of percentage of side effects, etc.  In my quest for being prepared to ask valid and important questions of the oncology staff, I felt I needed to know more core information.  Actually, the more I read, the more horrified I became, and  began to get caught up in the grim outlook that was being conveyed.

I'm recovering from lots of information, and realize that even what I am reading is taken from data that is 5 to 10 years old, and there is very little information related to all the variables as you mentioned.

Have accepted that our journey will be unique to us, and we will take each day as it comes and try to make the best of it.   I so appreciate you sharing your story and your input.

I will "stay the course"

Vicki