Update on Clinical Trial

Portal Forums Member Updates Lung Cancer Member Updates Update on Clinical Trial

This topic contains 63 replies, has 9 voices, and was last updated by catdander forum moderator catdander forum moderator 1 week, 3 days ago.

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November 9, 2016 at 8:41 pm  #1289135    

scohn

OK – latest update.
The CT scan shows the main lung tumor is starting to grow again at the normal rate, but the liver lesions are essentially stable (a little growth in one, a little shrinking in the other). So my wife had another POSSIBLA treatment for the moment.

However, the basic idea is that the clinical trial doctor thinks it is time for a change of treatment. Not sure what it will be yet, but it may be a trial drug that I had stumbled upon a couple of months ago and showed my wife a couple of weeks ago when we thought POSSIBLA was losing its oomph. It’s a drug that they just started doing Phase I trials on in Denver (and elsewhere) and will be available in Chicago in a couple of months (with the same trial doctor we have here in charge of the Chicago site). It is a new drug developed specifically as a TKI for HER 2 Exon 20 mutations (and EGFR Exon 20 mutations). So we are talking tomorrow with my wife’s regular doctor about the possibility. According to my wife (I wasn’t there) the trial doctor at U of C thinks it may be a good next option.

Another possibility brought up by the doctor was a couple more rounds with POSSIBLA, and if it is still showing growth in the main tumor, stability or shrinking in the liver tumors, and no new metastases, then doing a PET scan and if it only shows up on the main tumor doing some local radiation. The trial doctor said even if the PET scan shows only activity of the lung tumor, surgery is probably not really an option given the area of partial lung collapse around the tumor being close to the main bronchial tube (or something like that). I suspect if that ever got to be even close to an option we would be conferring with the pulmonary surgeon.

So that’s mainly it – probably nearing the end of the road with POSSIBLA alone and looking towards POSSIBLA and radiation, or AP32788 (we’re going to need another name…). Perhaps our talk with the regular oncologist tomorrow will cheer me up from the election.


Wife, lifelong non-smoker, dx 4/24/15 adenocarcinoma, right middle lung, stage IV, poorly differentiated. 2 bone mets, 1 lymph node. HER2 Exon 20 mutation. 6x Carbo/Alimta – 50-70% reduction in primary tumor, lymph nodes normal, bone regrowth into lesion site. Alimta maintenance, not effective, tumor growth, 2 new liver mets. 11/15 – Opdivo; Not effective – tumor growth & new liver mets. 4/16 – clinical trial drug, tumor & liver met reduced 50-70%. 11/16-main tumor growth, liver mets stable.

November 10, 2016 at 12:04 am  #1289142    
catdander forum moderator
catdander forum moderator

Hi scohn, I’m sorry ya’ll are seeing some progression but it’s great the trial docs are thinking about local treatment for the persnickety part if the the rest behaves appropriately. You want to squeeze as much out of that treatment as possible. I know what you mean about the election, I appear to be taking it rather hard. For a pick-me-up you might want to check out dorie4’s latest post. It made me happy.

Hoping for the best,
Janine

November 11, 2016 at 6:23 am  #1289151    

lynnandpete

scohn, so sorry to hear about the progression, but the fact that there’s another possibility waiting in the wings already with a new drug that targets her specific gene profile could be very promising! will keep hoping for you.

we just got the results of the CT after the first 2 treatments and the majority of the tumors and lymph nodes appear unchanged. some of the smaller ones still grew, but apparently the sheer number of tumors is making it hard to measure accurately. :( so pete got another dose of possibla Wednesday and now we battle the stomach pain and fatique again. he’s switched from Vicodin to gabapentin and that seems to be helping…..or maybe he’s just not awake long enough to notice the pain!!

to make things just a little more exciting, I’ve come down with what we thought was pneumonia but is so far only severe bronchitis. with a very low oxygen level and very high blood pressure, I was having a terrible time breathing the last few days! with an inhaler and some steroids, at least i’m headed in the right direction. one of us needs to be able to breathe around here!

November 11, 2016 at 10:45 am  #1289159    
catdander forum moderator
catdander forum moderator

Lynn, just want to lend my support. So…get well soon. Perhaps Pete’s body will regulate itself in a way that adjusts to gabapentin so not to cause so much sleepiness. My husband takes it as well and seems to adjust after a time (though his adherence to consistent use is lacking).
I wish there was more to do to help. Keep living life,
Janine

November 12, 2016 at 8:43 am  #1289165    

scohn

Lynn and Pete,
Sending healing hugs for a quick recovery of the bronchitis! I am glad the gabapentin seems to be helping – It made a lot of difference for my wife’s nerve pain.

I am sorry to hear the POSSIBLA (glad to see our name is catching on) didn’t seem to have much effect in the first two treatments. Hopefully it will help in the next one. We’ll keep the two of you in our hearts and prayers for the ADC to start kicking in and working!

As for us, the regular oncologist also thinks the new trial would be a good thing to try and get into. (But then we would have to come up with a new drug name.) My wife scheduled the PET scan before we go to Denver to see family after Thanksgiving, in order to assess the degree to which POSSIBLA tamped down the cancer. At that point we would see if radiation was an option, but at the same time we are trying to organize the possibility of the new trial drug. It basically is thought to work the same as afatanib (which my wife already has approval for if needed) only better (less side effects as it works more specifically on the mutated cells and less on the normal ones). One issue we hadn’t considered that the oncologist brought up is that if we irradiate the main tumor first we would need to check if we would still be eligible for the new trial study as it would make the tumor a poor candidate for trial study measurement since much of the tissue would be dead and the size and shape changes over time.

So, the next month or two will be filled with decisions for us as we determine all of our options.
We look forward to Thanksgiving with all our kids (and our new in-laws will be there as well) followed by a niece’s Bat Mitzvah and then my Dad’s gravestone unveiling – hard to believe it has already been a year.

But, except for my wife’s cough which has definitely returned, she feels good (other than the election….)

Best wishes to all for a Thanksgiving full of family, and love, and friendship.


Wife, lifelong non-smoker, dx 4/24/15 adenocarcinoma, right middle lung, stage IV, poorly differentiated. 2 bone mets, 1 lymph node. HER2 Exon 20 mutation. 6x Carbo/Alimta – 50-70% reduction in primary tumor, lymph nodes normal, bone regrowth into lesion site. Alimta maintenance, not effective, tumor growth, 2 new liver mets. 11/15 – Opdivo; Not effective – tumor growth & new liver mets. 4/16 – clinical trial drug, tumor & liver met reduced 50-70%. 11/16-main tumor growth, liver mets stable.

November 23, 2016 at 1:59 pm  #1289246    

scohn

Just got the PET results back – here’s the upshot.
Between the Carbo/Alimta and the POSSIBLA the cancer was pounded down, but not out.
The number of liver lesions appear to be down, but metabolically active cancer still in the liver, the lung tumor, and (disappointingly) the three bone lesions that had all shown bone repair and we thought were gone.
So, good news – no new metastases, and lesions are smaller than when we started – Bad News – all the old ones, while much smaller, are still active, and if the last CT is holding true the main tumor at least, and possibly one of the liver lesions, is starting up again. It seems as though each new treatment, when effective lasts for about 6 months, and then…..

So, my wife has an appointment for Monday with the next (last?) dose of POSSIBLA, but it looks like we are destined to see if we can qualify for the next trial drug, a HER2 inhibitor, for which the trial is currently ongoing in Denver, and will soon be coming to Chicago. If she can’t get into the trial for some reason, she will likely be switched to afatanib. Take a deep breath and onward we go! Looks like the next month or so will be destined for another transition.

But no worries – she still feels great, we’ve got a lovely Thanksgiving weekend planned with all the kids and the new in-laws coming in. We are blessed with friends, family, and love – and for that, Thanksgiving still warms the heart.

Warmest wishes to everyone out there in CG-land, and may your Thanksgivings be filled with all the blessings of love your heart can hold.


Wife, lifelong non-smoker, dx 4/24/15 adenocarcinoma, right middle lung, stage IV, poorly differentiated. 2 bone mets, 1 lymph node. HER2 Exon 20 mutation. 6x Carbo/Alimta – 50-70% reduction in primary tumor, lymph nodes normal, bone regrowth into lesion site. Alimta maintenance, not effective, tumor growth, 2 new liver mets. 11/15 – Opdivo; Not effective – tumor growth & new liver mets. 4/16 – clinical trial drug, tumor & liver met reduced 50-70%. 11/16-main tumor growth, liver mets stable.

November 23, 2016 at 3:46 pm  #1289248    

lynnandpete

dear scohn, with the holidays obviously comes new hope and a new perspective. we wish you the absolute best possible news and promise for new effective treatments. you are strong and have gotten thru many, many things….you can do this next hurdle too!!

things here unfortunately, aren’t going very well. I ended up spending 5 days in the hospital last week with pneumonia and partially collapsed lungs!! just what we needed!! oh well, none of us gets to pick the timing of our troubles do we! i’m home now and recovering slowly. pete has also made a huge decision he will no longer be participating in the possibla trial at the univ of Chicago. the back/leg/stomach pain plus the crushing fatigue has finally taken its toll and he is opting for quality vs quantity from this point on. our hope is that the longer he’s away from the drug, the better he’ll start to feel so that we can enjoy the holidays and go on a few trips and have some fun. his new oncologist also said that there’s a drug that was approved only 2 weeks ago that is opdivo-like and that pete could possibly try that once the possibla is out of his system. he truly doesn’t think it’ll help (since pete has done many months of opdivo as well as the opdivo/urelumab trial with no success) but it’s worth a try. so we look forward to feeling better and enjoying the time we do have.

in the meantime, we hope and pray for you and everyone here for a happy holiday season with visions of healing dancing with the sugar plum fairies and whoever else makes magic happen!!

November 23, 2016 at 6:57 pm  #1289252    
JimC Forum Moderator
JimC Forum Moderator

Hi scohn,

Thanks for the update, although I’m sorry to hear that the scan results aren’t what you would like them to be. It can be tough to find a treatment that will provide a durable response, but until you do it’s good that your wife’s cancer seems to respond to each new line of treatment, at least for a period of months, and that she is feeling good. Hearing of your Thanksgiving plans with family gives me one more reason to be thankful on this special day dedicated not just to feasting and watching football, but to celebrating each moment as a unique and wonderful experience.

I always think of everyone who visits GRACE, no matter where they may live in this world, as part of an extended family, and I’m glad that your branch of the that family will be celebrating together tomorrow.

JimC
Forum moderator


Jul 2008 Wife Liz (51/never smoker) Dx Stage IV NSCLC EGFR exon 19
4 cycles Carbo/alimta, 65% shrinkage
Tarceva maintenance
Mar 2010 progression, added Alimta, stable
Sep 2010 multiple brain mets, WBR
Oct 2010 large pericardial effusion, tamponade
Jan 2011 progression, start abraxane
Jun 2011-New liver, brain mets, add Tarceva
Oct 2011-Dx Leptomeningeal carcinomatosis; pulsed Tarceva
At rest Nov 4 2011
Since then: http://cancergrace.org/blog/jim-and-lisa

November 23, 2016 at 7:03 pm  #1289253    
JimC Forum Moderator
JimC Forum Moderator

Hi lynn,

I’m sorry to hear of your hospitalization, and I hope that your recovery speeds along. As far as Pete’s break from treatments, it sounds like a good idea, because as you know continuing treatments for long periods of time can be so tough. I hope you can enjoy every upcoming moment together without much thought of doctors or treatments or appointments, and that Pete will feel much better for it.

Have a Happy Thanksgiving.

JimC
Forum moderator


Jul 2008 Wife Liz (51/never smoker) Dx Stage IV NSCLC EGFR exon 19
4 cycles Carbo/alimta, 65% shrinkage
Tarceva maintenance
Mar 2010 progression, added Alimta, stable
Sep 2010 multiple brain mets, WBR
Oct 2010 large pericardial effusion, tamponade
Jan 2011 progression, start abraxane
Jun 2011-New liver, brain mets, add Tarceva
Oct 2011-Dx Leptomeningeal carcinomatosis; pulsed Tarceva
At rest Nov 4 2011
Since then: http://cancergrace.org/blog/jim-and-lisa

November 23, 2016 at 11:00 pm  #1289254    

scohn

JimC – thanks for the warm words of community. It’s always nice to know that there are people out there in a connected community of caring. I hope you will be having a wonderful Thanksgiving as well.

Lynn – so sorry to hear of your pneumonia. Glad you are out of the hospital and on the mend. And I hope Pete will begin to feel better as well as he gets more of the POSSIBLA out of his system, and that your holidays will be that much brighter for both of you. Thank you so much for your kind thoughts as well. From the moment my wife got her diagnosis we have found so many people going on so many different journeys. It helps to know there are others out there rooting for you! And healing dances of sugar plum fairies sounds awfully nice for everyone.

All the best, scohn


Wife, lifelong non-smoker, dx 4/24/15 adenocarcinoma, right middle lung, stage IV, poorly differentiated. 2 bone mets, 1 lymph node. HER2 Exon 20 mutation. 6x Carbo/Alimta – 50-70% reduction in primary tumor, lymph nodes normal, bone regrowth into lesion site. Alimta maintenance, not effective, tumor growth, 2 new liver mets. 11/15 – Opdivo; Not effective – tumor growth & new liver mets. 4/16 – clinical trial drug, tumor & liver met reduced 50-70%. 11/16-main tumor growth, liver mets stable.

November 25, 2016 at 4:58 am  #1289258    

jlpavlik77

Hi there. I am new to this page, I have found your thread encouraging. My dad, 62, non smoker, lifelong health nut and distance runner was diagnosed in April with stage IV nsclc after he had been self diagnosing himself with asthma for about 2 months. He has metasteses on his liver, kidney, sternum, femur, L5, T12, and some lymph nodes. He received 5 treatments of Carbo/Taxol and Avastin before the neuropathy became too severe. The chemo held the cancer, but no shrinkage. He then went on avastin maintenance, but after 2 treatments the cancer grew slightly. He just had his first dose of Opdivo and will have his 2nd Tuesday. Last night it seemed the neuropathy was the worst that it has been. He couldn’t walk and could only sit at the table long enough to eat Thanksgiving dinner. It is heartbreaking to watch this man who has been so active not even be able to walk. I am curious if the Opdivo is worsening the neuropathy. The dr wanted 4 treatments over 8 weeks, but I don’t know if he will be able to tolerate that. Now he told my mom he is uncertain that he would try a clinical trial. He seems so sad and hopeless. I don’t know if this is the right place for this discussion, I just want him to see that clinical trials can be beneficial, and that it isn’t time to give up. Thank you.

November 25, 2016 at 7:52 am  #1289259    
JimC Forum Moderator
JimC Forum Moderator

Hi jlpavlik77,

Welcome to GRACE. I am sorry to hear of your dad’s diagnosis, his disappointing response to treatment thus far, and the difficulty he is having with neuropathy. While it is true that Opdivo can cause neuropathy, it doesn’t tend to be as frequent or severe a side effect as it is with Taxol. And unfortunately, the neuropathy from Taxol can linger for quite a while after the end of treatment, so it’s hard to know whether Opdivo is a contributing factor. Treatment breaks are often used to allow the body to recover from side effects, but even if you cease Opdivo, the neuropathy may not improve for a while, and even if it does you can’t be certain that stopping the Opdivo helped.

I wish I had a better and simpler answer for you. It may be that your dad just needs a treatment break, perhaps after the next Opdivo dose and I hope that his neuropathy improves very soon.

JimC
Forum moderator


Jul 2008 Wife Liz (51/never smoker) Dx Stage IV NSCLC EGFR exon 19
4 cycles Carbo/alimta, 65% shrinkage
Tarceva maintenance
Mar 2010 progression, added Alimta, stable
Sep 2010 multiple brain mets, WBR
Oct 2010 large pericardial effusion, tamponade
Jan 2011 progression, start abraxane
Jun 2011-New liver, brain mets, add Tarceva
Oct 2011-Dx Leptomeningeal carcinomatosis; pulsed Tarceva
At rest Nov 4 2011
Since then: http://cancergrace.org/blog/jim-and-lisa

November 25, 2016 at 8:31 am  #1289260    

scohn

Dear jlpavlik77,

I am so sorry to hear about your father’s diagnosis. It sounds like you’ve had a rough few months, and I know how scary those times can be, but I hope it helps just a little to know that there are those of us out here that will be thinking about you and hoping for all the best for your father and your family.

As for clinical trials, each one is different, with its own inclusion criteria and exclusion criteria, as well as treatment focus and side effects. In my wife’s case, for example, the red blood cell count (which got pounded during her carbo/alimta) rebounded pretty quickly once she was put on other treatments. So, how someone feels and respond to each treatment can be very different. And as for clinical trials in general, when we talked to our oncologist, he said that if you can get on a clinical trial and it seems like a good match for your form of lung cancer, he often recommends it, as it can be better than current standard of care.

The other thing about current clinical trials for lung cancer is that many of them are based on the molecular analysis of the cancer. Do they know the mutation(s) driving your father’s cancer? This can be a big deciding factor in which clinical trials might be appropriate or available.

As for Opdivo, the side effects my wife had did not include neuropathy, but every patient is different. However, neuropathy is a common side-effect of the Taxol based drugs, so your father may still be feeling the effects of that. He should talk to his doctor about the neuropathy and possible treatments to alleviate the pain. I know that gabapentin helped my wife enormously with the neuropathy associated with her current trial drug.

May holidays and the new year ahead bring health and healing to your father and your family. Sending warm holiday hugs across the digital miles.
Scohn


Wife, lifelong non-smoker, dx 4/24/15 adenocarcinoma, right middle lung, stage IV, poorly differentiated. 2 bone mets, 1 lymph node. HER2 Exon 20 mutation. 6x Carbo/Alimta – 50-70% reduction in primary tumor, lymph nodes normal, bone regrowth into lesion site. Alimta maintenance, not effective, tumor growth, 2 new liver mets. 11/15 – Opdivo; Not effective – tumor growth & new liver mets. 4/16 – clinical trial drug, tumor & liver met reduced 50-70%. 11/16-main tumor growth, liver mets stable.

November 25, 2016 at 8:04 pm  #1289263    

lynnandpete

welcome jlp altho i’m sorry you are in the position to be welcomed here at all. it’s a journey none of us expected, but the information & support found here is extremely helpful and comforting. the trial docs didn’t have much insight into what side effects to expect & it’s only been thru this blog that we got any help at all!!

my husband pete also has stage IV nsclc. he was on carboplatin/abraxane followed by opdivo.. the tumors continued to grow & spread on opdivo so it was deemed ineffective, however he FELT great on it & his cough had all but disappeared. nonetheless, the opdivo ended & we started a trial of opdivo plus urelumab which he did for 8 weeks with no improvement. after that came trial #2 which was a chemo antibody conjugate to a specific protein. while that halted the tumor growth after 7 weeks, he had such terrible problems with nerve pain in his legs, back and stomach that he has now made the decision to stop participating in the trial. we had really hoped gabapentin would help him & it did at first. however, now only Vicodin helps with the pain & that dose increases almost daily to achieve the same result. :(

just a couple of random comments on trials: since so many people are not accepted into trials, we felt we were lucky to get into 2 of them & thought we should give them a try. you can always stop…..but if you never start, you never know if it might have been the magic bullet. like scohn said, the genetic profile is very important….our first oncologist didn’t want to do the genetics testing, but finally agreed. unfortunately, it didn’t produce useable information but we had to try. I think for us, we wanted to know we had tried everything….we don’t want to wonder if there was something we should have done that we didn’t.
wishing you the very best and please ask questions here….there are a lot of helpful, supportive people willing to help….

November 26, 2016 at 4:12 am  #1289264    

jlpavlik77

Thank you all for your responses. When dad was first diagnosed we went straight to the Cleveland Clinic, the dr there told us there was no reason that he should have cancer and he was 90% sure it had to be genetic mutation. He had to have a plural effusion, so they were able to get a lot of tissues samples and sent them to Boston. Unfortunately, there was none. We were devasted because we had done all sorts of reading on targeted therapy and how effective it was.

There has yet to be a test or dr visit where we have received good news. Yesterday he took ibuprofen for the first time since all this started and it actually helped the pain in his feet. I am not sure why? Maybe because it is an anti inflammatory. We are going to ask about the Gabapentin. The side effect of that sound a little scary, but is probably worth a try.

We did find out last week that the lesion on his femoral head grew and is covering 35% now, so Tuesday before his Opdivo treatment he will get marked for radiation, and will start that Wednesday. They said when it gets to 50% his hip will break.

Another question I thought of. He is still fatigued. Could that still be the residual effects of chemo? His last treatment was about 9 weeks ago. Did your family members find this the case as well?

I also wanted to mention. My uncle, also diagnosed with NSCLC, 2 years ago, has been on Opdivo for 16 months and it has actually shrunk his tumors. He has virtually no side effects. As a matter of fact, he and my aunt are heading to Florida Monday, for the winter. He is a heavy smoker, still. The dr told us that he falls into the 20-30% of people that find effective from Opdivo.

Thank you all again. I hate that there is a need for such a forum, but I am grateful to have found somewhere I can ask questions, -and maybe sound off a bit.

November 26, 2016 at 9:05 am  #1289266    
JimC Forum Moderator
JimC Forum Moderator

Hi jlpavlik77,

As far as your dad’s cancer lacking the genetic mutations which you were hoping to see, I think what the doctor at the Cleveland Clinic was trying to explain was that since your dad never smoked, and may not have had any other known exposures to cancer-causing environmental factors, there was a higher likelihood of a targetable mutation. But though they appear much more frequently in never-smoking patients, those mutations are present in only a small percentage of NSCLC patients. Also, with rare exceptions, lung cancer is not caused by genetic mutations patients are born with; exposure to some kind of environmental factor such as smoking or radon gas causes mutations which allow lung cancer to develop. As a result, your uncle’s cancer and that of your father are not likely to be similar. So any difference in response to Opdivo is not surprising; we still don’t fully know why some patients respond so well and others don’t.

Radiation is certainly the most effective way to prevent fractures caused by bone metastases, and I hope that it will help your father as it has many patients.

Regarding treatment for neuropathy, you may find this post helpful, as it discusses various medications used to treat that condition. Ibuprofen doesn’t seem to be commonly used, but of course if it continues to work it’s hard to argue with success.

Finally, it’s not unusual for chemotherapy-related fatigue to linger for a while, plus your dad is experiencing pain and neuropathy, each of which can be fatiguing in themselves.

JimC
Forum moderator


Jul 2008 Wife Liz (51/never smoker) Dx Stage IV NSCLC EGFR exon 19
4 cycles Carbo/alimta, 65% shrinkage
Tarceva maintenance
Mar 2010 progression, added Alimta, stable
Sep 2010 multiple brain mets, WBR
Oct 2010 large pericardial effusion, tamponade
Jan 2011 progression, start abraxane
Jun 2011-New liver, brain mets, add Tarceva
Oct 2011-Dx Leptomeningeal carcinomatosis; pulsed Tarceva
At rest Nov 4 2011
Since then: http://cancergrace.org/blog/jim-and-lisa

January 3, 2017 at 8:29 am  #1289690    

scohn

Hi everyone. Here’s a quick update, not so much for anything new, but to give others who might be reading this a sense of the questions and considerations that patients and oncologists have to deal with regarding clinical trials. We have another CT scan set for this week, but earlier signs point to the current trial drug having a mixed response – conquered most of the liver lesions, bone lesions steady though active, but renewed growth in one liver lesion and main lung tumor. So, the trial drug doctor thinks a new clinical trial (HERCURELEZE??) may be in order but the question becomes when.Things to consider:

1) When to Switch. As said many times on this website, bad brakes are better than no brakes, so if a drug is having a mixed response, how long do you allow slow progression in some areas before you switch to something else. If you see progression to you wait for new metastases or a particular threshold size for growing tumors? If Stage IV treatment is a marathon, when exactly is the right time to pass the baton to a new runner drug.

2) New Trial vs. Standard Care. In our case, we know the mutation, so we could switch to a drug which is known to work (afatanib) but has a number of side effects and usually only lasts 6-12 months. Does one go for a new trial with a drug designed to have better targeting and lower side effects, or do you try the known drug and hope to be still qualified for a trial if the drug loses effect, or go to the new drug first, and then go to the known standby if the trial doesn’t work?

3) Timing of Trial Drug. Do you try to get into trial as soon as possible (e.g. Phase1) or do you wait until some of the dosing and side effects information has been obtained (Phase1b or Phase 2)?

Balancing an individual’s rate of progression, side effects profile, and potential efficacy of new drugs is not always so easy, especially with the underlying anxiety and desire to quickly smash the cancer into smithereens always in the back of the mind.


Wife, lifelong non-smoker, dx 4/24/15 adenocarcinoma, right middle lung, stage IV, poorly differentiated. 2 bone mets, 1 lymph node. HER2 Exon 20 mutation. 6x Carbo/Alimta – 50-70% reduction in primary tumor, lymph nodes normal, bone regrowth into lesion site. Alimta maintenance, not effective, tumor growth, 2 new liver mets. 11/15 – Opdivo; Not effective – tumor growth & new liver mets. 4/16 – clinical trial drug, tumor & liver met reduced 50-70%. 11/16-main tumor growth, liver mets stable.

January 4, 2017 at 6:18 am  #1289700    

lynnandpete

greetings. my wish for all of you is a hopeful and peaceful new year. for me 2017 will be the first year of my new life.

unfortunately, pete lost his battle at 12:30 am dec. 26th. while i know i’ll be ok, i also know i’ll never be the same. fortunately the grandkids live in the moment and still smile and laugh as much as they ever did and i will do the best i can to follow their example. 6 year old zoe asked if i have any pictures of grampy when he had his hair and beard and no tubes….”we can just look at those pictures and remember him that way!” silly me….why didn’t i think of that. yes zoe, we’ll certainly do that….and we’ll smile and laugh again…someday.

so i can only hope for the best for all of you this year. and please…enjoy every moment you have….and hug and kiss the ones you love. life is way too short.

January 4, 2017 at 8:10 am  #1289701    

scohn

Hi Lynn. I am so sorry to hear about Pete. May you continue to find comfort and blessing in many wonderful memories. When my Dad passed away a year ago in December it was his grandkids (and great-grandkids) who similarly infused our nights with life. Some of the grandkids even decided to put on a “talent show” with kids, grandkids, and great-grandkids, performing. It brought us smiles and laughter and would have been exactly what my Dad would have wanted.

And life indeed is too short – and we must cherish every moment we have. My wife and I have just been deeply saddened, as we just found out yesterday that the partner of one of my daughter’s friends, who had attended her wedding just 6 months ago, died yesterday. Such a tragedy – the couple was at the wedding and they were full of light and laughter and joy and now….

Each moment is a blessing – each moment is a gift.

My deepest condolences to you and may you find peace. My wife and I will be thinking of you and your family. Your note of love and kindness, even in the midst of your pain, is deeply appreciated.


Wife, lifelong non-smoker, dx 4/24/15 adenocarcinoma, right middle lung, stage IV, poorly differentiated. 2 bone mets, 1 lymph node. HER2 Exon 20 mutation. 6x Carbo/Alimta – 50-70% reduction in primary tumor, lymph nodes normal, bone regrowth into lesion site. Alimta maintenance, not effective, tumor growth, 2 new liver mets. 11/15 – Opdivo; Not effective – tumor growth & new liver mets. 4/16 – clinical trial drug, tumor & liver met reduced 50-70%. 11/16-main tumor growth, liver mets stable.

January 4, 2017 at 11:44 am  #1289704    
catdander forum moderator
catdander forum moderator

Dear Lynn, I send every condolence to you and your family. How lucky to have your grandkids around to show the way of lightness. In their own time of loss children can be a becon of hope, a light at the end of a tunnel. You will remain in my thoughts sending you strength and hopes that healing will happen.
Janine

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