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.
<p>I began visiting GRACE in July, 2008 when my wife Liz was diagnosed with lung cancer, and became a forum moderator in January, 2010. My beloved wife of 30 years passed away Nov. 4, 2011 after battling stage IV lung cancer for 3 years and 4 months</p>
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.
Wife, non-smoker, dx 4/24/15 adeno NSCLC stage IV. HER2 Exon 20. 6/15 6x Carbo/Alimta; effective. 9/15 Alimta maint; ineffect. 11/15 - Opdivo; ineffect. 4/16 - ptK7 trial; effective 1.5 yr. 9/17 Gemzar; effective 16 mo. 8/18 -TAK788 Trial; ineffective. 10/18 Abraxane; effective. 7/19 Kadcyla; effective. 10/19 Carbo/Alimta/Keytruda followed by Alimta; ineffective. 4/20-Poziotinib; effective. 7/20-4/21 - Enhertu. 4/21-?? Abraxane/ramucirumab.
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....
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.
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.
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.
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.
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.
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.
Her cure leze? I like the sound of it. I can't tell you how much we appreciate you sharing the incites into which decisions are made for treatment.
(((hugs and hope all around)))
Thanks Janine. Cyber Hugs are welcome anytime! I hope you have the happiest of New Years, and I'll keep in touch once we know more from this latest CT.
So it looks like relatively good news from the latest CT scan, and POSSIBLA is holding up to the name we gave it. The main lung tumor still grew, but at a much slower rate than from the last CT scan. The one liver lesion that still lit up with last month's PET scan also shrunk a little, after growing a little on the last CT scan - the other measured liver lesion that showed no PET activity last month stayed stable. No new metastases, no significant change in bone lesions, and a very minor increase in one lymph node in the area.
So it looks like everything is relatively stable this time, with reduced growth in the main tumor, and most importantly, no new metastases. This all seems to correspond with the experimental rationale for the drug that shows PTK7 is likely not just a marker for adenocarcinomas, but may be important in the ability of tumors to form new tumor initiating cells that support tumor growth and metastases.
So, we can take a bit of a breath now in seeing the regrowth we saw in the last CT scan has been tamped down a bit. My wife sees the oncologist for details (and her next POSSIBLA infusion) this afternoon, but for the moment it looks like my wife will stay on POSSIBLA, at least until the new ARIAD EGFR/HER2 TKI trial comes to Chicago in March or April.
Deep breaths, and one day, one CT scan at a time. Another emotional Gatorade® for the marathon.
As always - my heart and hugs go out to all those going through this. A chorus that my wife and I are in is singing at a memorial service this weekend for a member who died recently of cancer, which keeps the scourge even more on my mind.
!!!YaY!!! So good to hear the news. Anything's POSSIBLA...
I am sorry about your friend and fellow caroler. It makes it even more difficult to see when you are going through the cancer experience yourself.
Take care you two.
Latest update - looks good! Just got back our latest CT results after about two months. Almost everything is the model of stability. No new metastasis in the liver, all liver spots are the same size or slightly smaller. Main lung tumor is the same size (very tiny bit smaller). I am guessing that this drug must be generally producing some stable results in trial patients, as they told my wife that while she can still get a CT scan every 6-8 weeks, at this point in her trial they only require one every 10-12 weeks (tumor has been generally stable for about 4 months).
The only disconcerting news is that it looks like those small bone metastases might be starting to act up. They aren't any bigger, but there is one new rib metastasis, and one of the others has some signs of tissue breakdown surrounding it. With her initial chemotherapy my wife was on Xgeva (as they said Xgeva appears to help slow any recurrence of bone metastasis) but for this trial they wanted her to have Zometa, as they worried Xgeva might interfere with clinical trial drug since both were antibody based. However, since the Zometa isn't working for holding back bone breakdown or new initiation of bone metastases, my wife is going to try to ask again if she can have Xgeva.
As for the other trial drug, the HER2 TKI being developed, apparently the phase I dosing is going slowly (possible due to the buy out of ARIAD by Takeda) and so will probably not go into phase Ib/II expansion into Chicago until late 2017. My wife's trial doctor said that since the current trial drug is still working, she wouldn't recommend her going to that other trial until at least the new trial drug's dosage is worked out and they have some initial results on its efficacy.
So, once more a sigh and breath for a good CT scan, and we go onward! Only 4 months until our trip to the Galapgos!
That's great news, and thanks for sharing it with us. As far as the bone metastases, your local doctors would best be able to judge, but it the apparent progression there is minimal, it might make sense to wait until after the next scan to see what is really going on. At times, scans can be misleading, and since the cancer is under control everywhere else, it might be good not to rock the boat until you're sure a change is necessary.
In that same vein, I think you're getting good advice to wait on the other trial drug. Even if the dosage is set and it's showing signs of efficacy, there's no guaranty it will be effective for any one particular patient. Stability in pretreted stage IV lung cancer is a very good result, so you might want to get as much benefit from the current therapy as possible.
Hoping for continued good results.
The Galapagos! Yes! We want pictures.
I'm so glad to hear the scans look good, what a relief it is for you and yours. Let us know what the outcome is on the xgeva and zometa. My hopes are with you and her with lots of hugs.
Thanks Jim and Janine!
One minor point I forgot was that I wanted to mention a method of control of side effects for anyone reading this and having similar symptoms. Since being on the PTK7 trial drug my wife has had digestive issues (kind of alternating bouts of diarrhea and constipation). She read up a little on things that might help, and, with the approval of the trial nurse, tried taking some slippery elm capsules. They have worked great!! The only caution that the trial nurse mentioned is that the capsules should be taken at least 2 hours before any other medication, as it somewhat coats the intestines and can interfere with the absorption of other drugs or medications. But it worked wonders in less than a week.
Thanks for the tip, and so good to hear it worked well (and quickly!) for your wife.
Slippery elm was touted by another user in this thread for general digestive problems, and the thread contains other recommendations that might help you at some point as well.
Keep sending us positive updates...we love 'em!
Well, the latest CT Scan is good and stable, for the most part. Main lung tumor, bone metastases, adrenal glands, all seem unchanged. So, after a brief bout of starting to grow last year, the main lung tumor is now holding steady at about 50% of its largest volume for about 5 months. However, while the liver spot that did not show up on the last PET scan continued to decrease in size, the main active liver spot increased in size and there appears to be more small liver spots appearing. But my wife is seeing the doctor today when she gets her drug treatment, so she will probably get more details then. We were a bit concerned as her cough seems to have been getting a little worse the past few weeks, but it does not appear to be due to any major growth in the lung tumor.
Why is the news on lung cancer rarely if ever just good. Since the primary is stable and the only place of progression is the liver I wonder if ablation is an option. Best hopes to y'all and I've got my fingers crossed.
Thanks Janine for your good wishes!
Minor update. The trial drug oncologist thinks the radiologist was pretty aggressive with the interpretation and is not convinced there is much growth in the liver. However, in case the cancer does start growing, the oncologist suggested retesting the liver tumor for mutations/markers to see if there are any changes. My wife said the oncologist was also getting a little frustrated that the ARIAD trial drug is taking so long to get to Phase II in Chicago, and suggested that my wife may want to talk to the trial drug people in Denver to just get an initial sense of whether registering to start the drug there at some point before it comes to Chicago would be advisable or not.
But I feel good about going to the March for Science in Washington last weekend to help promote science and scientific research!
Latest update - CT scan shows everything is still stable (no change at all in main lung tumor, no new suspicious lesions seen, no changes in lymph nodes, no changes in bone lesions, although the rib is ). Interesting point on the new CT report though. After the big conferral of radiologists and oncologists on the last CT scan to determine if the liver lesions were really growing or not (their conclusion was possibly, but not substantially, and not with absolute certainty, so basically stable), the new CT report does not even measure the liver lesions, saying there was no gross changes in the lesions, "given the differences in technique and timing of contrast". So it looks to me like as long as all else is well, unless they really see a major change in the liver spots at this point, they are unlikely to report the size, to ensure that the RECIST criteria continue to allow my wife to take the trial drug.
Given the continued stability, we are not going to start on the other new trial drug quite yet, but we are still going to Denver, and will possibly meet with the people at the cancer center there if they still want us to. After the last call, my wife wasn't sure whether they wanted to meet if we weren't ready to immediately start the trial (which they are ready to do).
On the symptom side, my wife's cough seems to be getting worse, and may be the reason, in part, for what the CT scan sees as the formation of a very small hiatal hernia. The CT scan also reported there was slight emphysematous changes, so this might be what is causing the increased cough. She also has been experiencing ashiness, possibly from her recent dose of Zometa for the bone lesions (under the trial drug criteria she can't take Xgeva).
Counting the days - 5 weeks to Galapagos.
Latest update - CT scan shows everything is still stable (no change at all in main lung tumor, no new suspicious lesions seen, no changes in lymph nodes, no changes in bone lesions, although the rib is still showing a mild fracture as seen probably). Interesting point on the new CT report though. After the big conferral of radiologists and oncologists on the last CT scan to determine if the liver lesions were really growing or not (their conclusion was possibly, but not substantially, and not with absolute certainty, so basically stable), the new CT report does not even measure the liver lesions, saying there was no gross changes in the lesions, "given the differences in technique and timing of contrast". So it looks to me like as long as all else is well, unless they really see a major change in the liver spots at this point, they are unlikely to report the size, to ensure that the RECIST criteria continue to allow my wife to take the trial drug.
On the symptom side, my wife's cough seems to be getting worse, and may be the reason, in part, for what the CT scan sees as the formation of a very small hiatal hernia. The CT scan also reported there was slight emphysematous changes, so this might be what is causing the increased cough. She also has been experiencing achiness, possibly from her recent dose of Zometa for the bone lesions (under the trial drug criteria she can't take Xgeva).
Minor question. I just edited the post (found a few typos) and now it doesn't show up at all. Did I do something wrong? Thanks!
(In case it doesn't show up still - here is the previous post)
I'm not sure what happened, but I don't see that post now either. Some kind of glitch with the editing process, I guess. Sorry about that, but I'm glad you were able to recreate it. I'll reproduce my response here so that it follows in logical order:
Thank you for sharing your wife’s terrific news! As you know, in this context stability is a great result, and it’s good that she’ll be able to continue on the trial. I think it makes sense not to add the other trial drug at this point, and get as much benefit as possible from the current regimen. On the other hand, continuing to research future options is wise.
I’m sorry to hear of her worsening cough. I hope that her doctors can help her find some relief. If you haven’t already seen it, Dr. Harman has a good post on managing cough here.
Have a great time on what should be an incredible trip to the Galapagos!
In looking at this further, it seems that what happened is that in the course of your edits the post was grabbed by our spam filter I could restore it, but since you've already recreated it, we'll just leave it be, together with my reply.
Ah! Thanks Jim for checking that out. Your filter has obviously checked out my writing before and knows where the quality of my work really belongs :-D
And Jim - thanks for the cough info. Reminded me of one other brief thing to mention. Her cough got pretty bad last night, so when she got up she tried a dose of her vinegar-honey recipe for coughs and it lasted for about 12 hours with no cough! Doesn't always work, but it does sometimes, so it's always worth a try. She normally uses the dextromethorphan, but it hasn't been working quite as well lately. When she first started taking dextromethorphan for the cough, it kept getting put in her ongoing medication records as Dextromethadone or some other narcotic, and we had to keep getting it corrected! We used to laugh wondering what drug it was going to show up as on her list. They finally got it right. Apparently since dextromethorphan is usually used as part of a mixture with an expectorant or decongestant, and not as a sole medication, they had a hard time finding the right code to enter it in correctly.
OK - the new Foundation report has come in. She appears to have developed (at least in the liver lesion where the biopsy was taken) a new amplification of the AURKA gene. This is the Aurora Kinase A gene (one which I know a little about from the Cell Biology meetings I go to). This gene does seem to be amplified in some tumors, but I am also guessing it is particularly amplified in pre-treated tumors, since this gene affects the mechanism by which cells organize internal proteins (microtubules) to divide. Since the trial drug is based on a microtubule poison to stop cells from dividing, it makes sense that finding ways to divide with fewer microtubules would be one of the ways the cells get around the drug. So, this may be the reason that some of the liver lesions may seem to be responding a little less well to the trial drug than the main tumor. It may be that the main lung lesion is still unaffected by AURKA amplification.
So, we will talk to the oncologist, but it may still be a wait and see - keep with the current clinical trial drug until there is definite signs of progression, and then switch if necessary to the new clinical trial drug in Denver (or Chicago if we can hold out until then). Since the new clinical trial drug operates at a different level (directly on HER2), it might be completely unaffected by the AURKA amplification.
The other thing the report said is that my wife has a very low tumor burden. This is good news for understanding the nature of the tumor (i.e. HER2 is likely the only real driving mutation still), but bad news for any future immunotherapy, as there seems to be increasing evidence that tumor burden may be as strong (or stronger) an indicator of immunotherapy effectiveness as PD/PDL presence (see e.g. https://genomemedicine.biomedcentral.com/articles/10.1186/s13073-017-0424-2).
Hooray! The trial has approved the use of Xgeva again instead of Zometa. Hopefully that will be one less side effect to worry about! My wife had joint/muscle pains with Zometa similar to Neulasta.
Excellent news, scohn! I hope that makes everything easier for your wife. Keep sharing the good news!
YAHOO Scohn et al
I hope the change will do y'all good.
Just wanted to let everyone know that all is well, and that we had a great time in the Galapagos! My wife had a little chest pain now and then that was likely due to the heavier breathing (Quito is at 9000 ft) that seems to have completely subsided now that we are back home in Chicago. She seemed to do better on hiking some of the trails than I did (but she is better person than me in most respects).
And we got back in time for her to have another dose of the clinical trial drug the first day back!
As always, thanks to everyone for all their support and encouragement!
That's really wonderful...I'm so glad you were able to make such an incredible trip. I can't imagine how fascinating it would be to visit the Galapagos. And getting back in time for another dose worked out just perfectly.
And it does sound like your wife is a terrific person, but we think you're pretty special too. I think you're lucky to have each other.
Please keep these great updates coming!
Well, we haven't gotten the official CT report yet, but the trial oncologist has told us (a few days after her initial review that things looked basically stable) that the tumor board reviewed the latest scan, and based on growth in the liver and some new lymph nodes showing up, they have determined that the drug is no longer effective enough, and my wife is no longer eligible for the trial drug. It was a good 16 months, but....
The trial oncologist and our regular oncologist are going to confer, but the trial oncologist is suggesting going on Gemzar. The trial oncologist thinks afatanib would not be a good choice as she has found it to have a lot of side effects, and relatively poor efficacy. She has seen much better results with Gemzar. The other new trial drug made for Exon 20 mutations of EGFR and HER2 that is currently in Colorado should be coming to Chicago soon (late fall?), and so it is another option [also when in Chicago it would be a phase II, and not phase I, so they would have more of the dosing worked out]. The oncologist said one option is to start soon with the Gemzar, see if it works, and if not then go to the new trial drug. Another option is to take a break with chemo for the moment and wait a few months until the trial drug comes to Chicago.
Since my wife is feeling relatively well, and wants to keep any liver growth at bay, she feels she is likely to just go with the Gemzar and see if it works. It is a whole different pathway than the current trial drug, so we are hoping it might also help to reverse some of the neuropathy. Basically it works on similar mechanisms to the Carboplatin treatments, which worked really well, but seems to have fewer side effects.
Anyway, once more into the breach. Since the trial seems to be over, this may be the last entry in this thread, and I will start a new one with the new treatments.
Also, now that we are ending this trial, for those who might want to know what the main side effects with the PTK7 ADC trial drug were for my wife during her 16 months on it:
Hair loss- (after about 5 months)
Digestive issues - (greatly helped by taking slippery elm)
Joint Pain - (helped by gabapentin)
Peripheral Neuropathy/Occasional Hand Strength issues - (at this point after 16 months the tips of her toes and fingers are pretty numb - we will see if this starts to return after stopping the drug)
Some body rash/Itching - started about 10 months into the trial, treated with about 10 days of mild steroids after each drug treatment
Overall good side effect profile - no reduction at all in WBC or RBC
No effect on energy level or mobility
On drug effect side - showed great reduction of tumor over about 2-3 months, then generally stable after that.
It likely would still have stability were there not a genetic change in the liver tumor.
I'm sorry that the new scan results will bump your wife from the trial. The options presented by her oncologist seem reasonable. As far as afatinib, Dr. West has had this to say:
"[A]fatinib has been shown to NOT be especially effective for rare EGFR mutations (and results of EGFR TKIs in patients with exon 20 mutations have tended to be unimpressive, or at best quite variable), and its value in treating ERBB3 (HER3) is unknown, but we couldn’t presume it will be effective. Because afatinib is not approved by the FDA for people with these mutations, it may not be covered by your insurer. Even if it’s possible to get it paid for, it very well may be ineffective.
I have generally given an EGFR TKI to most patients, at least as a later treatment option, because sometimes I have been surprised to see an excellent response in someone reported as not having an activating mutation. I think that’s a reasonable approach to try here, and afatinib might be a fine one to try based on the ERBB3 (HER3) mutation as well. However, the report’s mention of afatinib should be construed more as “hey, you could always try afatinib, I suppose”, rather than “afatinib is highly likely to lead to a good response”. - http://cancergrace.org/topic/exon-20-and-erbb3-amplification-is-afatinib...
Given her good performance status, I can understand your wife's interest in keeping the liver mets under control, shifting to Gemzar seems to be a good choice, and likely more tolerable than the leading alternative, Taxotere, which generally has a higher toxicity profile.
Thanks Jim! I appreciate your help as always!
The insurance approved afatinib right away (more than a year ago) after the HER2 was confirmed in the sequencing of the biopsy, but everything I have looked up has also shown the results in treating HER2 mutations to be very positive (high percentage of positive response or stable disease), but short-lived, requiring far higher dosages than its use for standard EGFR mutations, and thus with the potential for lots of side effects. The Gemzar seems like a good alternative, and hopefully if my wife goes on it she will recover a bit of the neuropathy that occurred (while any of the taxol based therapies would likely only increase the neuropathy). Moreover, the hope is that Gemzar would at least work long enough to make it until the HER2 clinical trial drug makes it to Chicago in Phase II. And we will still have afatinib possibility in our back pocket.
I will update more once my wife meets with her regular oncologist this week.
I'm sorry your wife has further progressed and off the trial. It's good to hear she won't need to deal with a taxane and I hope she does well on gemzar. I don't know that my husband, Don is an example of how effective it can be. Even though he took it for over a year it appears he was already cured (I still have to cross my fingers when I think that but he's at 5 years post treatment and recent CT haze has cleared). There are others who have come through Grace who have had many months success with gemzar with low toxicity.
Hugs all around,
Thanks Janine. I really appreciate it. It helps to know that there is support from the many who have travelled this path before. One day and one chemotherapy at a time.... We just watched the movie Paterson last night, and it was all about the poetry and love that is all around you in everyday life, if only one takes the time to listen and look. Be well!
P.S. Here's a shot from the eclipse I took. Sara now wants to go to a spot for totality at the next eclipse (another good one coming in 7 years).
Nice photo, glad that your local weather gave you the chance to see it.
Lisa and I drove down to the centerline of totality in Tennessee and it was incredible.
What a beautiful pic! JimC and Lisa took some nice pics of the total eclipse and they were just a few miles (as the crow flies) from where Don and I watch it. My new term for how it made me feel is Eclipse Verklempced. Not exactly the true spelling or pronunciation but...
I would say that the next US total eclipse is a very goal for Sara. I know how difficult that is for you to wish for but it must be doubly * infinity for her so I already love Sara for her goal setting even though I've never met her. I believe there's one in Argentina in just a couple of years. Road Trip?
Thanks! It was really cloudy here, and no totality, but the clouds would break just enough to let us see it off and on. I know several friends who went down to Tennessee to see it and said it was amazing. I also had a number of friends who went down to Carbondale here in Illinois (the center of the eclipse) and said it was great, but at the SIU stadium where they set up for it, clouds came at the last minute and they only saw a few seconds of totality. A good friend who is an astronomer went to Grand Tetons for the total and said it was also amazing!
As for the road trip - Possibly! When I told my wife about the one in 7 years here she said something to the effect of, "That's nice, but there must be a full eclipse somewhere sooner we can travel to!" The one in a couple years goes through Chile & Argentina, but most of it is in the ocean, so we might just have to take an eclipse cruise!
Yes, Sara is amazing. We continue to operate in the surreal world between doing whatever it is she needs to do currently, figuring out the best next approach to take, and planning for the future as normal. As I have mentioned before, it helps a lot that Sara is in great shape physically for the most part, and that almost everything we have had to deal with has been the side effects of treatment, and so far we have held the cancer at bay enough to have relatively few primary effects. Who knows how long that will last. I do not know all the roads our lives will travel in the future, but I know I have already been blessed by the roads we have already travelled.