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Lisam81

Need Help Pls..My dad recently diagnosed with NSCLC..

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Hi all,

My dad (64 years old) found out on 2/28/18 that they suspected lung cancer following a CT scan.  It was confirmed and I got him in ASAP with Moffitt Cancer Center in Tampa.  After a PET scan, it was confirmed stage 4 NSCLC.  My hope was in the Opdivo/Yervoy clinical trial they were offering but was heartbroken to find out a few days ago after the PET scan that he did not qualify for the clinical trial because there wasn't a whole tumor they could safely remove, which is needed to qualify.  The 2 inch mass in his lungs is pressing a bit on the right ventricle of his heart.  They have not gone over the results from the PET scan, but the CT showed it looks to be contained to one lung, metastasis to the adrenals, and possibly in the fluid surrounding the one lung.  He has a needle biopsy set for next Thursday and he had the brain MRI yesterday.  No results, but I feel things are moving so slow. 

Moffitt called the other day and said they want to get him into another clinical trial that they are researching there solely.  It is a combination of Keytruda and Vorinostat (Phase I/II).  I cannot find any info on this combination and something in my gut doesn't feel right about this.  I think his cancer should be hit aggressively at this stage, possibly a 2 chemo option with Keytruda together from my research.  To me, this trial seems like "let's see how long we can extend his life" rather than let's hit it as aggressively as we can in the hopes of shrinking tumors and make it to 5-6 years out mentality. 

I am in the process of trying to get him into Baptist MD Anderson in Jacksonville (we live in Orlando) for a second opinion.  This seems like it's moving slow too.  They made an appointment for 4/2 for a second opinion but I'm trying to get that moved up. 

Has anyone heard of Keytruda and Vorinostat being tested together?  And am I right to feel like this might not be the best first line of treatment for my dad at this point?  I am an only child, so I'm doing the best I can for my parents and my dad.  I do not want to make the wrong decisions for him as they are looking to me for significant help in this.

Thanks for any help!!

Lisa

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Hi Lisa and welcome,

I'm sorry to hear about your dad's diagnosis. I haven't heard of this combination. To increase your chances of finding someone on these forums who knows about this, I suggest you post under either Chemotherapy or Immunotherapy with a topic title of "Keytruda and Vorinostat. Best of luck. Your wise to help your dad get a second opinion, since the first one doesn't feel righ to you.

Bridget O

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Yes, getting a second opinion is a great idea. I am being treated at M D Anderson, Houston, and I feel comfortable with their skills, knowledge and compassion. It took 6 weeks after my referral for my first appointment. My sister called and connected with a "patient advocate" who said the delay was in not getting my records after my oncologist sent them 4 times. Check for a "patient advocate".

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Lisa,

We wouldn't have a lot of information on a Keytruda and Vorinostat  because the second drug is the topic of a combination immunotherapy study being performed at Moffitt.  Here is a summary of the study.  Note that in the study the word Pembro is used.  Pembro is an abbreviation for the scientific name of Keytruda -- Pembrolizumab.  Keytruda is the trade name for the drug and it is indeed a significant advance in treatment of non small cell lung cancer.  Keytruda is an immoutherapy drug and this type of therapy has proven to be effective and significant, so much so, that it has been elevated to first line standard of care in qualifying patients.  Here is more information on immunotherapy.  To read about Keytruda, select the text after the right arrow titled Immune Checkpoint Inhibitors.

Keytruda or Pembro or Pembrolizumab (all the same stuff) is good stuff all by itself.  I wouldn't know if it is better or worse when combined with Vorinostat for that is the purpose of the study.  But, your question becomes if your dad wants his first treatment to be a study or if he wants conventional treatment by a medical oncologist.  The conventional treatment may involve administering Keytruda as his first line treatment.  There are advantages and disadvantages to a study administering Keytruda and to receiving the drug as conventional oncology treatment.  The primary advantage of the study is drugs and accompanying medical treatment are generally no cost to the patient.  But there are disadvantages and they primarily align under the column of choice.  When participating in a clinical study, freedom of choice is restricted and some of these choices involve where you receive treatment, diagnostics and treatment and medicine for side effects.  You are correct to carefully weigh the advantages and disadvantages of study participation.

One more thing about studies and their literature.  All studies have a prediction or objective of progression free survival.  This timeframe is a measure of effectiveness of the new therapy but it does not mean that all patients will achieve this time or be limited to this time.  The progression free survival statistics are criterial to measure if the study treatment is better than a compared conventional treatment.  They don't necessarily correlate to actual lifetime.

I do however have a question about your post. From my reading, your father has yet to have a biopsy, is that correct?  If it is, then I would encourage waiting until the biopsy results are received before making a decision on treatment, including study treatment.  Once the type of lung cancer is determined from the biopsy, more treatment alternatives may become available. For example, your dad's biopsy may indicate he has a form of non small lung cancer called adenocarcinoma and some people with adenocarcinoma can benefit from new therapy called Targeted Therapy.  This has been a complicated answer to your simple question but lung cancer is complicated.  Feel free to ask follow up questions.  This is why we are here.

If you brokered a second opinion from MD Anderson at Jacksonville in only a little over 2 weeks, I'd say well done.  

Stay the course.

Tom

 

 

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Thank you all!!

Tom, no he hasn't had a biopsy yet.  He will have the biopsy on 3/22 but Moffitt wants an answer on the clinical trial by 3/26, leaving us not much time to decide between the biopsy and then.  I kinda feel stuck right now.  And YES, I made the second opinion happen on 3/20 at Baptist MD Anderson!  I didn't give up and accept the 4/2 date and they moved it to 3/20.  I know how lucky we are for this and I am so thankful!  But right now we're left in the dark.  It appears it may have spread to the bone, the right 4th rib, but not in the brain.

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Lisa,

I would like to share my knowledge regarding Keytruda + chemo as it relates to my mom's NSCLC treatment.

Firstly, this is my mom's 2nd bout of lung cancer treatment.  Her first included traditional chemo and radiation after a right, upper lobectomy.  After 1 year, she was diagnosed with a recurrence.  We were lucky in that many breakthroughs in treatment occurred in the 2 years from her original diagnosis.  This time, through biopsy, it was found that my mom has a high expression of PD-L1 in her cancer cells, about 90%.  So, it was recommended that she receive Keytruda, as well as, Carboplatin + Alimta.  Adding this chemo cocktail for the first 8 sessions was found to increase overall effectiveness of the treatment from about 50% to 55% (and could be higher for those with a high expression of PD-L1).  These are relatively new findings, only about 1 year old.  My mom ended up receiving just 6 rounds of Keytruda + chemo and is now just on Keytruda.  The chemo was pretty tough for her this time, but she made it through and from the looks of things, the treatment seems to be working at the moment with reasonable side effects.  

In thinking about you and your dad's situation, I really want to share with you the importance of the biopsy and molecular testing.  As Tom said, there are so many targeted therapy options out there that we already know are working.  And if your dad would qualify for Keytruda, great!  His docs would likely suggest adding in carbo + alimta, something we already know increases effectiveness of Keytruda.  I would caution jumping into a study without knowing what all of your options are based on the biopsy.  And although the path to diagnosis seems long and drawn out, it is necessary to make sure the most effective type of treatment is being thrown at the cancer.

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So my dad (64 YO) underwent his biopsy of the adrenals (where the cancer has spread to), and all testing finally. Official diagnosis - stage IV NSCLC adenocarcinoma. He has a 3-4 cm mass in his right lung pressing into the right ventricle of the heart causing Superior Vena Cava Syndrome. Mild shortness of breath, dizziness and blue veins on his chest from the SVC. Cancer has spread only to the paratracheal lymph nodes, very small amount in the right 4th rib bone, and both adrenals. Brain MRI - negative for cancer. Left lung - negative and nowhere else is showing cancer yet. Initial blood test for genetic mutations came back a few days ago - everything is NEGATIVE! Completely deflated me on that. EKG done the other day - came back abnormal but sinus rhythm normal.

Second opinion at Baptist MD Anderson went as follows: Dr there was more concerned about SVC and palliative care. Wanted to do targeted radiation only to the lung mass to shrink and relieve pressure on the right ventricle. Targeted radiation for 6 weeks, palliative only for those 6 weeks, and wouldn't begin treating the cancer until 6-8 weeks out. This would also mean that he would not be eligible for any clinical trial after the targeted radiation to the lung mass only. Dr said low volume cancer right now.

Went back to first place - Moffitt - a few days later. My concern was the Keytruda/Vorinostat clinical trial they wanted to put my dad in. Had our second visit with the thoracic oncologist there. Went very well. Dr there is not as concerned about the SVC as the dr at Baptist MD Anderson. Said it's not bad enough YET to prolong treating the cancer now, will monitor it and evaluate each time, but that he wants to start cancer treatment now rather than palliative care only first. I felt much better about the clinical trial and we opted for Moffitt and the Keytruda/Vorinostat clinical. Dad was feeling positive and ready to get this started. Moffitt set up the trial, said he still needed another CT and EKG and blood work to get ready for the trial and his first Keytruda infusion was set for today, 3/28. Yesterday the doctor called and said my dad's PDL1 came back 0!! He needed at least a 1 to be eligible for the trial. So today was out and so was this trial. Completely let my dad down and he went from optimistic to feeling defeated.

Dr said the only other option now is Carboplatin and Alimta chemo (standard of care) or a clinical trial they are doing that is Carboplatin, Alimta and a third drug called Pirfenidone (FDA approved immune-enhancing drug for lung fibrosis). Clinical trial is in Phase I so no info on anything about it. Obviously we opted for the clinical trial to receive the same treatment plus the third drug because maybe it's better?

Dr said my dad COULD get Keytruda with chemo NOW but that if he did it would disqualify him from any second line treatment clinical trials that he would be eligible for if he failed the chemo + Pirfenidone clinical trial. We decided that it might be more devastating to disqualify him from any immunotherapy second line clinical trials than to take our chances with Keytruda in first line and have it possibly fail. I know PDL1 isn't always foolproof in who responds to Keytruda as I talked to a lady who had a PDL1 of 0 and Keytruda worked great for her and then a man who had a PDL1 of 90 and Keytruda failed to work for him. He is having another CT and EKG tomorrow to get ready for this new clinical trial and then he will start the Carboplatin/Alimta/Pirfenidone clinical trial this Friday.

I can't help second guess and wonder if opting for Keytruda with chemo in the first line is the better choice or if it's not worth the chance to disqualify him from any second line immunotherapy clinical trials should he fail the first line. My dad is very discouraged with this latest treatment as obviously we'd like above standard of care and right now that's almost his only option until second line unless we did Keytruda first line and put all eggs in one basket. My dad feels this is just going to prolong a little. Dr did say treatment plan is the same but just a different order now. This dr believes as long as a person receives immunotherapy and chemo that it doesn't have to be together at the same time, but will still have the same benefits. I hope that's correct but right now we have to trust him on that. We are still waiting for the other gene mutations to come back, which won't be for a little while, but as of now every single thing is negative. Dr's goal is obviously to get him to the 5 plus survival mark, but it feels options are dwindling.  Thank you for everyone's help!  I can't always respond with everything going on and the out of town trips to the cancer center, but I assure you I am reading them all!!!

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Lisa,

Lung cancer treatment has become complicated. Your dad's case 5 to 7 years ago would have resolved as -- surgery: yes or no.  If no, then conventional radiation and chemotherapy.  Now with targeted therapy, immunotherapy and precision radiation, choices abound but are difficult.

I see no problem with trying the study and holding Keytruda in reserve.  Many I know are having second line combination chemotherapy and Keytruda with good results.  Carboplatin and Alimta or Pemetrexed (scientific name) are good stuff all by themselves.

If it were me, I'd consult a cardiologist about pressure on the right ventricle. I also think the cardiologist should be told about the MD Anderson physician concern about tumor caused ventricle pressure.  If the chemo doesn't affect the tumor quickly, you may need to prepare for a study exit and radiation to relieve the SVC. Be prepared.

When every single thing looks negative, the next thing is bound to be positive. I know it is hard; lung cancer is hard scrabble in the extreme.  But, line up all the problems in a row and pick them off one at a time.

Stay the course.

Tom     

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Lisam, one more month has passed and i'm super interested in finding out how's your father's feeling? my mother is going through a very similar situation and that's why i'm here, been super interested in talking with people going through similar situations... how do you deal with it? how your parents are dealing with it? etc. etc. thanks!

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