Hi All
This is my first post here as my mother just got diagnosed with stage IV NSCLC adenocarcinoma in Aug. 60yo, never smoked. EGFR/ALK/ROS1 mutations -ve. She has been coughing since Mid Feb and the symptom had gone worse in recent weeks, including more frequent and difficult cough. PET scan suggest the cancer has metastasized to adrenal gland, neck lymph node on the right and also a bit to the back bone.
We are situated in Hong Kong and through government clinic we have the chance to participate in a clinical trial of using MEDI4736 + tremelimumab as 1st line treatment. The selection process will take 3 weeks probably and with 50% of the chance, candidate could be put in control group that only standard chemo treatment will be given. We have consulted a second opinion in the private sector and got a recommendation to proceed with standard chemo (Carboplatin + Pemetrexed) instead to avoid worsening of tumor and symptoms.
I am more inclined to take the traditional approach first but would like to obtain opinion on this case. In particular:
1. Will a 3-week wait worsen the situation of the tumor? In worse case, it may be a 3-week delay but still going back to chemo treatment if we fall into the control group.
2. Do you think it's worth to secure a chance in testing the new drugs? Is there any clear advantage in using the new drugs as a 1st line treatment (in view of no PD-L1 testing first performed)?
3. Is standard chemo still a first choice as 1st line treatment in this situation? If chemo is desired, I have heard of adding bevacizumab to the chemo combination would be better but my doctor at private sector is inclined not to add it at first stage. Any opinion on this?
Many thanks for all the comments in advance and my prayers to all of you on the same journey as my family.
Reply # - August 20, 2016, 08:42 AM
Hi Mike,
Hi Mike,
Welcome to GRACE. I'm sorry to hear of your mother's diagnosis and her worsening symptoms. Although we can't make a specific recommendation for her treatment choice, I can review some of the factors to consider.
Immunotherapies have gained quite a bit of press lately because some patients have had very good, long-lasting responses, without significant or unmanageable side effects. As Dr. Creelan has written:
To address question of anti-CTLA-4 plus either PD-1 vs. anti-PD-L1:
...
I believe most would agree that this combination concept is more potent. My understanding is that there are several advantages to the combination: for example, based on scant information so far, the responses seem to be independent of PD-L1 status. There also seems to be a higher proportion of responders as well, although still not as high as we want, which is 100%. At the same time, the combinations do seem to have more autoimmune side-effects as well: GI, skin, endocrine, for example. These are usually quite manageable with courses of steroids or hormone supplementation. Nonetheless, in contrast to chemo where almost everyone has some cumulative toxicity, most patients cruise along with few problems. At the end of the day, most patients are wiling to accept a higher risk of these auto-immune side effects, if it means NOT talking about recurrent lung cancer. - http://cancergrace.org/topic/medi4736/page/3/#post-1265367
On the other hand, many patients do not get that kind of significant, durable response. Perhaps most importantly for your mother's situation, it can take several weeks for lung cancer to show a response to immunotherapy. If her symptoms are getting worse, that may continue while waiting for immunotherapy to provide a response.
When no driver mutation has been identified, standard chemotherapy remains the first choice treatment, and with adenocarcinoma carbo/Alimta is a very popular regimen, in part due to its favorable side effect profile.
[continued]
Reply # - August 20, 2016, 08:52 AM
[continued from previous post
[continued from previous post]
Symptom improvement may be seen after one or two infusions, and it's typical to re-scan after two cycles to determine efficacy. If continued progression is seen with that regimen, a decision may be made to change therapies. A patient might need to wait a bit longer to give immunotherapy a chance to reveal its true effectiveness.
The value of adding bevacizumab to a standard chemo doublet is not clear. Its approval was based on a single trial that showed an incremental benefit, but other trials have not clearly demonstrated that benefit.
I hope that whichever treatment choice is made provides timely relief of symptoms and long-lasting response.
JimC
Forum moderator
Reply # - August 20, 2016, 11:50 PM
Hi Jim
Hi Jim
Many thanks for your input. With inadequate results from the new drugs, I believe we will take the traditional chemo approach first for faster lessening of symptoms and hope there would be other opportunities just in case 2nd line treatment is required.
Thanks for your help and comment
Mike
Reply # - August 22, 2016, 07:47 PM
MIke,
MIke,
I'm glad we could help answer your questions however I must respond to your last statement. Unfortunately cancer is most often not curable when there are metastases outside the lung where the primary tumor is found; however it is treatable and even maintained for many years. I say all this to say that if your mom's cancer has spread she will most likely need 2nd line treatment at some point.
"Most likely" is a term I use a lot because up until until about 10 years ago standard chemotherapies were the only systemic anti cancer treatments available for nsclc. Now there are targeted therapies that some people have taken successfully for 5 years and more without progression of the cancer. Treatments for nsclc are growing quicker now than anytime in the past but for now those who are responding remarkably well to treatments are too few and the reasons for that are not well understood.
Another growing topic of study is the idea of oligo-metastases, if a person has just 1 or 2 metastases there are instances where they have been treated with curitive intent and have not had the cancer come back. Though this too remains too few and still understudied and not understood.
Lastly the people who have cancers that aren't curable are living longer and better than anytime in the past due to better palliative care (care one gets for no other reason than to feel better). Good studies have shown people who get good palliative care live significantly longer and better than those who don't.
Really lastly ;) personally my husband had what is considered a very difficult to treat squam nsclc which had grown into the chest wall and caused lots of damage, it was treated with rad/chemo (standard fare). Not only that but it was believed that he had 2 mets that remained undiagnosed. Today he's not had treatment for 3 1/2 years and is NED.
There's always hope.
Janine
Reply # - August 25, 2016, 09:45 AM
Hi Janine
Hi Janine
Many thanks for your sharing as well. In view of the recent advancement in medicine and technology, I agree there is always hope when there is a desire to live, or at least achieve a better quality of life with uncurable cancer. My mother has been the most positive among the family ever since the diagnosis, even though she understands much of the medical advancements in the past 10 years could not help her. I believe a positive attitude still helps in getting along with the cancer.
She has started the first dose chemo treatment on this Monday, and from today she started to have greater fatigue, constipation and also pain in part of the ribs while coughing. Understand mostly they are side effects but the bone pain may signify worsening of disease, I wonder if it is too early to say chemo is effective in reliving the cancer or not.
Knowing it's difficult, but I still hope the symptoms and side effects won't hit her positive attitude.
Best Regards
Mike
Reply # - August 25, 2016, 05:17 PM
Hi Mike,
Hi Mike,
It's not expected to see results after just one treatment. However side effects are pretty common. Fortunately they can usually be managed. If your mom is having uncontrolled pain and diarrhea or other symptoms her treatment team should be alerted at once so they a plan can be made and put to action.
I hope she is feeling better soon.
Janine
Reply # - January 25, 2017, 11:41 PM
Hi All
Hi All
It's been some time since my last post. Would like to provide some update and get some insight on proper next step.
My mother had finished 4 cycles of carbo + alimta with minimal side effects. Her PET scan afterwards shown improvement in the lung and bone mets, and also her CEI has dropped from over 4000 to around 600. Symptom-wise she had also improved greatly that her cough had stopped completely. The doctors at our government sector followed their standard procedure to stop the carbo and remain alimta as maintenance therapy
This is where things go the other way round. Her coughing resumed before the second alimta maintenance treatment and CEI had rose to over 700. Situation did not improve after the 3rd alimta only dose and a PET scan was arranged and it turns out the main tumor and also the bone/adrenal gland mets had all worsen. Doctor suggested alimta is of no use any more and suggested to start keytruda at 2mg/KG/3weeks as a next step (without PDL1 testing).
We consulted our doctors at private sector for second opinion and he believed we stopped carbo which shown to provide benefits too early. Nevertheless, he suggested to go on docextal + carbo or immunotherapy. Knowing that we are subsidized to use the expensive keytruda at public sector, he agreed we should try it first but showed concerns on my mon's status getting worse if keytruda is not effective and doctors at gov sector being too confident with immunotherapy. At his recommendation, we arranged PDL1 testing with the sample tissue, obtained in Aug 2016 at a swollen lymph node that was used for diagnostic of the lung cancer and also the EGFR/ALK -ve status.
My mom did her first Keytruda injection last Fri, and had (from our view) no immunotherapy related side effects up to now. She is still coughing and occasionally having small pain at hip bones suspected to relate to the bone mets. And we are still waiting for the PDL1 testing result.
(to be continued)
Reply # - January 25, 2017, 11:42 PM
(continued)
(continued)
1. Do you think such PDL1 testing can be used as an accurate indicator on the effectiveness of Keytruda? How should we and the doctors treat the PDL1 testing results?
2. I understand the chances of keytruda working is quite low given my mom's non-smoker status. Before another PET scan can be arranged, how the doctors and/or we should pay attention to find out if keytruda is working or not. What is the proper time to stop if there is no improvement?
3. It seems that we are left with the older types of chemo to try if keytruda is not working. Since carbo was the agent that provided the greatest benefit in the past, would it still be beneficial to go back to alimta/carbo or another carbo combination at that time?
Many thanks for all advice in advance
Mike
Reply # - January 26, 2017, 06:07 AM
Hi Mike,
Hi Mike,
I'm sorry to hear of your mom's progression. Although as you say the percentage of patients who get a very good response to immunotherapy is low, we will hope that your mom is in that group of responders.
There are two ways to judge response to treatment -- follow-up scans and clinical observation of improving symptoms. But as we discussed previously, it can take a bit longer for immunotherapy to show results, as opposed to standard chemotherapy, perhaps a couple of months. In that time, it is possible that her symptoms may worsen somewhat, making it more difficult to determine response. Of course, if she starts feeling better that is an excellent sign that therapy is working. I don't think that the PD-L1 test results will be as important as her apparent improvement, on scans and clinically.
If her cancer progressed while on Alimta maintenance, there's not much reason to return to it. If a change is deemed necessary, most oncologists considering standard chemotherapy would opt for a single-agent such as docetaxel (Taxotere) rather than a platinum-based combination regimen. Extended use of platinum agents tends to have cumulative effects, including a decrease in bone marrow function, which can decrease blood counts and make further chemo difficult to administer. That's not to say that it can't be done, especially if she was continuing to respond well after her third and fourth cycles of carbo/Alimta.
Good luck with Keytruda.
JimC
Forum moderator
Reply # - January 26, 2017, 06:45 AM
Hi Jim
Hi Jim
Many thanks for your comment. Just to add that we just got the PDL1 testing result that was from the right SCF node biopsy, and unfortunately it was determined as <1%. So there is a great chance keytruda would not work. Given this, do you think we should stop keytruda immediately and go for another chemo, or keep on the course for say 6 weeks and wait for worsening or improving symptoms/scans.
Apart from the cough, she is still performing well physically and could still have the energy to join social activities throughout various treatment, but now she feels devastated with the testing results and seems hope is lost. I would like to try to cheer her up while planning for the worst.
Best Regards
Mike
Reply # - January 26, 2017, 08:33 AM
I'm so sorry your mom didn't
I'm so sorry your mom didn't test better. Normally oncologists prefer to not drop a treatment before real proof of failure is proven through scans and clinical signs. There's still a chance it will have some benefit from the immunotherapy. As Jim said time will tell.
Even though she isn't EGFR positive tarceva has proven some benefit in later line treatment.
From what I understand it's all but impossible to forget and the truth about the cancer you have and when the mind does forget for a moment it comes back with a vengeance. So being happy may have a different meaning for your mom and "finding moments" of contentedness is a perfectly appropriate counter to "having a good time". From my personal experience as a loved one and through my years on Grace it seems the best way to raise spirits is spending time with friends and loved ones, doing things she enjoys, that bring her joy. Some people travel, go to the mountains or the beach, visit the people she hasn't seen in too long. I imagine the act of you trying fits into the category of things she loves.
Keep us posted and I'm hoping the hear good things.
All best,
Janine
Reply # - January 30, 2017, 06:48 AM
Hi Mike.
Hi Mike.
Just a note of support with more hopes and prayers that your Mom has good results on the immunotherapy.
I don't know if you talked about this with the doctors, but you might want to discuss with the doctors the possibility of doing a liquid (blood) biopsy to try and detect the actual mutations driving the cancer. While the tests do have less sensitivity than physical biopsies, they can often help determine the presence of rarer types of mutations, and sometimes give the doctors more information that might help them determine the best later lines of treatment, or which clinical trials might be most appropriate.
Thoughts and prayers are with your family for successful outcomes, and treatments that last a very long time!
Reply # - April 18, 2017, 07:39 AM
Hi All
Hi All
It's been a while and would like to share the latest status and get some support. My mom has gone through 3 rounds of keytruda and even though the symptoms (mainly cough) got mildly worse, CEA has risen from around 1200 before immunotherapy to near 4000, and PET-CT scan has shown progression and increased metabolism at multiple sites. Our oncologist determined keytruda is of no use and suggested to switch back to chemo with taxol/carbo as the combination.
She had her first dose 3 weeks ago and has been difficult in tolerating it, much more than when she had alimta/carbo. She had numb fingers and feet, and hair loss which had greatly affected her as a person having great concerns of her own look. More importantly, her blood test last week had shown very low white blood cell counts which may affect her next infusion this week. Since symptoms use she does not have much improvement yet, she is worrying such the effort and hardship she endured would prove no use.
Also since the middle of immunotherapy, she starts to suddenly had 'twisting' pain at the right waist only during cough. The pain does not appear otherwise and would lessen to nil even at cough after a few days. But after a few days again, the pain would come back. The oncologist only provide pain relieving medications (panadol) without further looking into the cost. We wonder if it was due to the bone metastases or if there are some kind of lung damaged by heavy coughing as every time it arouse during cough. She had developed such symptom again this morning and it was the first time she can't withstand and took medication for relieving pain.
To be continued
Reply # - April 18, 2017, 07:40 AM
Continued
Continued
It seems that we are out of options. On the rebiopsy, oncologist only suggests to do it for egfr patients (to test if there is t790m mutation). And seems there are no more clinical trial for patients after keytruda is used (despite clinical trials are already difficult to find in my place). I now could just look for methods to relief her pain and methods (eg diet) that could help to increase her white blood cell counts in order to continue the treatment.
Best regards
Mike
Reply # - April 18, 2017, 04:08 PM
Hi Mike.
Hi Mike.
Just want you to know we're out here think about you and your Mom and hoping the taxol provides some help. I don't know if it is an option for you, but when my wife's white blood cells plummeted on chemo, they gave her shots of Xgeva that definitely helped to boost the WBC.
Sending internet hugs of hope and healing to you and your Mom!
Reply # - April 18, 2017, 05:06 PM
Hi Mike,
Hi Mike,
I'm sorry to hear that the Keytruda was not effective for your mom, and that she's struggling so much with side effects from carbo/taxol. Taxol can be challenging for many patients, especially as far as neuropathy, hair loss and low blood counts. One option which might be available in place of Taxol is Abraxane, which is essentially the same drug formulated in a different manner, resulting in fewer side effects. When my late wife's oncologist recommended Taxol, we substituted Abraxane, which caused no significant side effects. You'd need to find out whether your insurance would cover it, as it is expensive, but since she is struggling with Taxol, there is a good argument that Abraxane is medically necessary. My wife's insurance covered it even before it was FDA-approved.
As far as the pain when she coughs, it would be difficult to guess what might be causing that. Perhaps further workup by your mom's medical team might unearth the cause; otherwise, if her treatment is altered that might resolve the problems.
Also, it might be worth asking your mom's oncologist about dropping the carboplatin. Many oncologists do not return to the platinum doublet after first-line therapy, preferring single-agent regimens instead due to the cumulative effects of continued platinum therapy, such as reduced bone-marrow function which in turn can affect blood counts.
I hope that your mom can find relief from her symptoms, and that she gets a good response from treatment.
JimC
Forum moderator
Reply # - July 23, 2017, 11:09 PM
Hi All
Hi All
A brief update on my mom's progress and to seek some further opinion.
She had 5 rounds of Paclitaxel and carbo up to now (with dosage dropped since the 2nd round due to low white blood cell count) and the CEA did drop from ~4000 to ~2400 at the 3rd infusion. She has been able to cope with the side effects, and the PET scan done after the 4th round also shown satisfactory improvement that near all of the tumors had shrunk in size and activity. However, the CEA value also stabilize and re-increased to ~2900 before the 5th round. She will have her 6th round next week and after that, our primary doctor suggest to pause as he afraid her body cannot cope with the accumulated toxicity.
We have also consulted 2nd opinion again through private sector and was suggested to test for a few more actionable mutations (BRAF, RET, MET exon 14 skipping and 1 another) but got a negative result for all of them.
Here is a summary of the treatment so far.
CEA ~4500 to begin with
Alimta + Carbo ( 4 rounds, CEA dropped to ~700)
Alimta maintenance (3 rounds, CEA increased to ~1200)
Keytruda (3 rounds, CEA increased to ~4000)
Paclitaxel + Carbo (5 rounds, CEA dropped to ~2400 before going up to ~2900 again)
Her physical status is still good at the moment, with less cough and a better PET scan result compared to the time ending keytruda treatment. However, it seems the situation could go worse soon given the rising CEA values and we are running out of options.
I have a few queries.
1. Is it still worth to seek trying another immunotherapy (though both our doctors at government and private sector did not suggest it as an option). It seems only PDL-1 inhibitors are available in my area but not CTLA-4
2. Is there still other chemotherapy that she can/should try or even re-use? Her doctors refuse to suggest until they think she really needs it. And I could not find much information online regarding 3rd or 4th line chemo treatment.
Best regards
Mike
Reply # - July 24, 2017, 12:12 PM
Hi Mike,
Hi Mike,
It's good to hear your mom is doing alright. I hope she's able to recoup a bit before beginning another treatment.
Unfortunately most oncologists including lung cancer specialists aren't likely to want to try a second immune checkpoint inhibitor. At least not outside a trial. At this time there are no CTLA-4 drugs proven to extend life for those with lung cancer. There are some trials that are testing combinations of PD-1/L1 inhibitors with CTLA-4 inhibitors. The toxicity profile seems to be rough for some.
You're not likely to find much about specific treatments for later lines of treatment though you can look to suggested 2nd line treatments for later line treatments. The list below can all used in later line treatment. Taxol, taxotere, abraxane and navelbine can all cause peripheral neuropathy and since your mom has had taxol it would probably be best to stay away from those that cause neuropathy from now on. This neuropathy can cause significant problems with continued use after neuropathy has begun.
Paclitaxel (Taxol)
Albumin-bound paclitaxel (nab-paclitaxel, Abraxane)
Docetaxel (Taxotere)
Gemcitabine (Gemzar)
Vinorelbine (Navelbine)
Irinotecan (Camptosar)
Pemetrexed (Alimta)
It's not been the custom to move back to a drug once stopped. Historically oncs have used up a drug before moving on. These days drugs like alimta have shown long term benefits without many or all side effects that outwardly cause one to feel bad but have ultimately been taken off of it because of high creatinine blood test. Once blood creatinine is back to acceptable limits alimta has been used again. If your mom didn't progress (shown on CT) on alimta moving back to it would be an option.
Cont.
Reply # - July 24, 2017, 12:18 PM
Genetic testing for
Genetic testing for actionable mutations in clinical trials is an excellent idea. I'll leave you with a link to a discussion on second opinions that includes a little info on clinical trials. (if you want more info on trials we have a series that's very informative.) There's a lot going on in this field right now. http://cancergrace.org/cancer-101/2011/11/13/an-insiders-guide-to-the-s…
I don't know if this has been discussed on here before but wanted to warn against making treatment decision based on CEA levels. They can be erratic in lung cancer and don't necessarily point to progression. Perhaps if you mom showed progression every time the levels rise and shrinkage every time CEA lowered you could be cautiously sure of the numbers meaning. But in deciding to change treatments especially at this point you want a really good reason like clear progression by CT or side effects that don't justify treatment. You can also use scanning and cancer symptoms as a gauge to start up treatment so your mom has a chance to break from treatment to heal from toxicities of treatment.
Please keep us posted and I hope you mom does well for a long time.
All best,
Janine
Reply # - September 1, 2017, 12:53 AM
Hi All
Hi All
First of all, my mom has recently past her one year mark from the date of diagnosis, which was out of our thoughts at the early days. I would like to think Jim and others for their support (both in knowledge and mental relief) throughout the year.
My mom has finished her last (6th) round of [ Paclitaxel + Carbo ] in end of July, and from mid Aug, she started to have infrequent cough again and the latest CEA test suggested a rise from ~2900 to ~3900, which is again near the level at her initial diagnosis (~4500). Our doctors at public sector stay on their previous suggestion to rest and even if a future scan confirm disease progression, they seems reluctant to provide further chemo treatment (of any type) and may consider palliative care only.
However, we just got an update from our previous mutation test for uncommon mutations that my mom's was indeed having HER2 exon 20 mutation. From my understanding, there are no approved therapy specifically for HER2 mutated NSCLC patients, and there is no clinical trials for HER2 NSCLC in my area. Our doctor at private sector suggested to pursuit off-label treatment by T-DM1 or Afatinib if disease progression is confirmed. The doctor prefers T-DM1 as the results for a trial announced in ASCO 2017 suggested a better response rate and less side effects than Afatinib, but it seems the figures for both medicine are not representative due to limited participants in the trials.
Reply # - September 1, 2017, 12:54 AM
(continued)
(continued)
My mom is still having good performance status (e.g. she can go up/down stairs and perform household work) so I think it may not be the time to give up cancer controlling treatments like the pubic sector advised. And it may be difficult to pursuit off-label treatment in public sector so we may need financing to have them in private sector. Do you have any information on my odds in having the below treatments? Is it possible to try one first and switch to another?
1. T-DM1
2. Afatinib
3. Gemzar (I noticed forum member scohn's wife, also HER2 mutant, is going to have it)
Or is it a sensible choice to have palliative care only as she already had 3 lines of treatment so the chance of disease control does not justify the potential side effects any more?
Thanks again for all your support.
- Mike
Reply # - September 1, 2017, 12:38 PM
Hi Mike,
Hi Mike,
It's my understanding that in the rest of the world drug prices are a small fraction of what they are in the US and T-DM1 and afatinib are probably too expensive to pay out of pocket. A call to the drug company can help figure out if you have private pay options. Gemzar is an older and much much less expensive (read, not under patent) drug that you may be able to talk your mom's public onc into providing. It's unusual today to find an oncologist who refuses 2nd line treatment to a person who is functioning as well as you say your mom is. If your mom is still willing and able to take 2nd line treatment there is no reason not to. I'd be very clear with the onc about that.
The following links are to posts about 2nd line treatment and maintenance vs waiting until clear progression. Many onc prefer to wait, giving patients time to rest and heal from the platinum doublet These oncologists believe the data aren't accounting for the many who progressed to a point where they were too sick to withstand treatment, preferring to scan every 12 weeks or so to catch the cancer in time.
http://cancergrace.org/lung/2010/10/04/lung-cancer-faq-2nd-line-nsclc-o…
http://cancergrace.org/lung/2010/09/24/lung-cancer-faq-im-coming-to-the…
I hope this is helpful.
All best,
Janine
Reply # - September 2, 2017, 08:54 AM
Hi Mike,
Hi Mike,
I completely agree with Janine in that, if your mom feels well enough to seek additional treatment, then absent a very strong reason given by her oncologist to the contrary, her wishes should be respected. One such reason might be that if the previous regimen has depressed blood counts, a treatment break might be in order to allow those counts to rebound. But that's completely different than just stopping anti-cancer treatment completely.
JimC
Forum moderator
Reply # - October 10, 2017, 03:57 PM
Hi Mike.
Hi Mike.
It's been a busy moth, so I didn't see this post until now. I will post the results of our latest CT scan (my wife took one today) as soon as I know it, but I just wanted to mention a couple of things.
When my wife was removed from the trial study for the PTK7-targeted drug, both the trial oncologist and our regular oncologist said that in general they had not been seeing very great results with the afatanib, and had a lot of side effects with it, so it is still a possibility, but we are holding off on it until later.
I also saw the ASCO results for T-DM1 against HER2, and will likely ask our oncologist about it sometime to see if it could be one of our future choices.
The Gemzar has seemed to be very mild in side effects, EXCEPT phlebitis. My wife's arms are now both sore from the Gemzar treatments, one arm several days ago and the other arm about 10 days ago. She puts warm compresses on both arms each night for a while which seems to help, but it has seemed to help with the hip pain, so we hope it is working.
As for lines of treatment - my wife is currently on her 4th (or 5th) line of treatment (depending on if you consider the Alimta maintenance a separate line or not) and we know of at least two approved drugs and one trial drug that are available in the future if this line doesn't work. I agree with Jim and Janine, as long as reasonable treatments are available, and your mother wants to do it, I would hope they would support her.
But most of all I wanted to send my hugs, and thoughts, and prayers for your Mom and your entire family.
All the best, scohn
Reply # - October 12, 2017, 08:20 AM
Hi Scohn
Hi Scohn
Many thanks for your input. And it's good to have virtual hugs from patients and care takers sharing the same sub-type of cancer. My mom was always asking different doctors and oncologists if she was the only one having this HER2 mutation NSCLC in the whole city/state. I'll let her know you as it counts knowing there are others in same situation striving to survive.
It's be a while and my mom's CT scan done in mid-Sep has confirmed disease progression, which is what we expected given her worsening cough and reduced appetite. We agreed with the doctors at private sector to put her on Afatinib, and she started on 5 Oct, with 30mg per day as starting point and switch to 40mg at end Oct if the side effects are tolerable. She is having diarrhea starting from the 4th day, and mild rash since today, which both are tolerable and can be treated with medicine. But what affected her most was the inflammation in the mouth and tongue since yesterday, which further affected her appetite. We need to find soft/liquid food for her.
But disease-wise she herself feels having more energy, and we feel her cough has sightly reduced. We are not exactly sure if it's the Afatinib taking effect. I have also found this report for a previous trial on Afatinib and the first case in the report match the exact same HER2 mutation subtype of my mom. Perhaps it's really helping despite a worse side effects portfolio. This was what our doctor at private sector were suggesting, that if a drug in theory can target a specific mutation, it's worth having a try if your body can affort. I believe Afatinib may also help your wife.
http://www.academia.edu/29359046/Clinical_activity_of_afatinib_BIBW_299…
Reply # - October 12, 2017, 08:32 AM
(continued)
(continued)
Talking about Gemzar, before we start on afatinib, the oncologists at public sector has suggested Gemzar as their only available option, but they were asking if we decided to continue treatment and it seems they don't have much confidence that Gemzar can really help. But it's relieving that for your wife it's well tolerated and seem to help with the disease (hip pain).
May I thank you for your support again and also I would like to share my thoughts and prayer to your wife and your family as well, hoping the current medication could be effective for both of us.
Best wishes,
Mike
Reply # - August 9, 2018, 10:03 AM
Hi all
Hi all
It’s been some time since I last posted. Would like to share the journey my mom and our family has gone through and have some advice.
My mother has been on afatinib since I last posted in Oct, and it has helped to keep her stable till May, except severe pain at left hip which was lessened by radiation. However, progression was confirmed by our oncologist at PET CT scan in May, and we have switched to use T-DM1, hoping it would work against her exon 20 HER2 disease, and also an extra round of radiotherapy at the back spine. There is also progression in brain with swelling but there was no brain related symptom so whole brain radiation was deferred to see if T-DM1 would help. However, after 2 rounds of T-DM1, our oncologist believed further progression due to increased left leg and hip pain and also worsen X-ray scans, which was then further confirmed by another PET-CT scan. We were put off treatment and sent back to public clinic oncologist.
At this stage, my mom now has great difficulty standing or walking due to tiredness and great pain at hip and leg. She is taking oral morphine syrup 4 times a day but it is only mildly helping with the pain. She also suffers from short term memory loss (e.g. difficulty in recalling what she has done earlier the same day). Her upper body and arms are still functioning well despite great tiredness. At public clinic, the oncologist only arranged whole brain radiation for her which would start next week, but is reluctant to arrange radiotherapy at hip and spine again due to the fact that she had it before already. For chemotherapy wise, they have suggested gemzar but believed it would only have a 10 to 20 percent chance of helping and afraid it would make her even more ill and thus suggesting us not to continue disease control treatment considering the risk against benefit, despite saying that her blood metrics fit for gemzar usage.
Reply # - August 9, 2018, 10:22 AM
(Continued)
(Continued)
At this point, what affect her most (both physically and mentally) is the pain at left hip and leg. We would very much like to seek ways for pain control and quality of life improvement even if life prolonging is not possible.
Some questions in my mind which I hope to get some advice or experience sharing
1. May I know are there better means of pain relief that can be administered at home, if radiotherapy or chemotherapy is no longer fit. My mom would very much like to stay at home and was reluctant for any overnight stay/treatment in hospital.
2. Is the whole brain radiation worthwhile at this stage as her only brain related symptom is tiredness and short term memory loss. It is energy consuming for her daily travel to hospital for the radiation as they plan to do it in a 15 times course.
3. For hip area that had radiation before, is it no longer useful to have another radiation to help her lessen the pain. The first radiation did help her a lot so we are not sure if it is a no go this time.
4. Is it no longer worthwhile to have any chemo treatment? From the PET CT scan matrix her disease is similarly worse around the lung like Oct last year before afatinib treatment. But her hip and spine has worsen in scans and she is greatly weakened due to difficulty controlling the lower body (mostly due to the pain). I believe pain control is the first priority but it can be (at least partially) handled, shell we seek chemo treatment again?
Thanks again for all your precious input.
Best Regards
Mike
Reply # - August 9, 2018, 11:47 AM
Hi Mike,
Hi Mike,
I'm sorry to hear of your mom's progression and especially the pain she's having from her hip and spine. Since that appears to be her most pressing problem, my first question would be whether it is clear that what is seen on the scan is cancer progression or damage to the bones caused by the disease. In that regard, perhaps a consultation with an orthopedic surgeon would be helpful, just in case there is a procedure that could mitigate her pain.
If not, the problem with repeat radiation to the same area is that there can be additional damage to healthy tissue which had already been damaged by the initial radiation treatment. Repeating the radiation could make the pain even worse. But the question of the feasibility of radiotherapy is a case-by-case decision for a good radiation oncologist.
Although radiation is usually favored as a means to relieve bone pain quickly, chemotherapy might be effective in killing cancer cells in those bones, which could lead to pain relief. Given your mom's current fatigue level, her oncologist would need to evaluate whether she is strong enough to tolerate the therapy. As far as the percentages quoted by the doctor, that's tough to quantify in a patient who has had several previous lines of treatment.
Regardless of whether any of the preceding options are chosen, a consultation with a doctor who specializes in pain control would be a good idea. Such doctors have many tools to help control a patient's pain, and though they may be referred to as "palliative care" doctors, such experts can help even when a patient is still actively treating their cancer.
Good luck in helping bring comfort to your mom.
JimC
Forum moderator
Reply # - August 9, 2018, 11:54 AM
Hi Mike.
Hi Mike.
I'm so sorry to hear of your Mom's progression, and hope she can get some good pain relief.
I also want to give you a brief update on my wife's treatment for her HER2. She was on Gemzar until 3 weeks ago. It worked great for her, as it was reducing, and then holding stable, all of her lesions for about 11 months. Her hip pain went away after 2 weeks on the Gemzar (the lesion is still there, but smaller/stable), and the pain has not returned. However, we are now entering a trial for a new drug - a inhibitor directly designed to target HER2 (and Exon20 EGFR). The trial oncologist we spoke to about it this last week seemed extremely positive about it, and my wife should start on this drug next week.
You may indeed want to look into this trial (TAK-788 is the name of the drug). The oncologist said they have all the EGFR patients they need, but they are actively recruiting HER2 patients, and are interested in HER2 patients both with and without brain lesions. I don't know what state you are in, but the information on the clinical trial and some of its locations are here:
https://clinicaltrials.gov/ct2/show/NCT02716116
I know there are more locations as well, as it is being offered here in Chicago, which is not on the list.
I also want to suggest you contact a new group, known as the Exon20 Group, recently put together as a group of oncologists, pharmacologists, patients, and patient advocates, specifically to help patients with dealing with their Exon20 mutations (EGFR or HER2). They seem really knowledgable and helpful. You can find their information here:
http://www.exon20group.org
and if you click on the contact link, there are email and phone numbers you can call-they got back to me right away and seem extremely helpful.
As for your questions on radiation, it might be helpful to discuss it with a radiation oncologist to get a better sense of the range of options and outcomes.
All the best to you and your Mom - and virtual hugs to you all!
Reply # - August 9, 2018, 12:02 PM
Hi Mike,
Hi Mike,
It looks like I skipped over your question about whole brain radiation. On one side of the issue, your mom is already experiencing fatigue, and WBR often causes increased fatigue (and possibly cognitive issues), which can sometimes be very significant and at times can linger for quite a while. Of course, the other consideration is that the effects of progressing brain mets can be very debilitating, much more so than the increased fatigue and other side effects WBR can cause.
So if it seems that the current symptoms of the brain mets are manageable, holding off on WBR is a possibility but you would want to keep a very close eye on her symptoms and perhaps schedule repeat brain MRIs so that WBR can be started if the situation changes significantly.
JimC
Forum moderator
Reply # - August 9, 2018, 12:14 PM
One more comment on the brain
One more comment on the brain mets. Often, the symptoms caused by such metastases result from the accompanying swelling around those lesions. The use of oral steroids (typically Decadron, generic name dexamethasone) can significantly reduce such swelling and the associated symptoms.
JimC
Forum moderator
Reply # - August 9, 2018, 08:06 PM
Mike,
Mike,
Just to add that maybe a pain management doctor can prescribe dilaudid (hydromorphone) and/or a fentanyl patch along with taking over the counter medications like tylenol. I hope your Mom finds relief from her pain.
Reply # - August 17, 2018, 10:13 AM
Hi scohn, JimC and onthemark
Hi scohn, JimC and onthemark
Many thanks for the suggestion on visiting a specialist on pain management. We did take this approach as relieving her pain has been our first priority. The pain management doctor did offer some change to the medication in type and dosage (e.g. changing the morphine syrup to extended release tablet) and it really helped my mom in lessening her pain. Now she had swellen feet and we tried to lessen it with massage.
She had started her WBR on previous Monday. We have also consulted another private sector oncologist and he believed that Chemo like Gemzer would worsen the side effects of WBR and suggested to hold it until WBR is done. He also suggested to perform an MRI at spine as he believed the pain is from nerve at spine area being pressed by tumor rather than the hip or leg which had radiation already previously. We hope her situation could be stable till WBR ends so we could see if there are next move.
Scohn, may I send my prayers to you wishing you the best with the trial. Your wife’s journey and disease control by various drugs had given hope to other HER2 patients like us. We would very much like to participate in medical trials like you but it is difficult outside the US. I had contacted the Exon20 Group late last year to ask about medical trial opportunities, but at that time the trial was mostly limited to the US. Given my mother’s situation, I believe she may not fit the entry criteria even if there is medical trial locally. I have heard about compassionate use of drugs and may be it is our only chance for new drugs, but I am not very sure of the procedure and chance especially for us outside US. I plan to contact the Exon20 Group again to see if they have contact to the drug researchers like that of Poziotinib for a trial.
Best Regards
Mike
Reply # - August 17, 2018, 07:16 PM
Hi Mike,
Hi Mike,
I'm so happy to hear that the pain management doctor was able to help your mom feel more comfortable. Often they can work wonders to relieve pain that seemed completely intractable.
Typically, chemotherapy is paused or its dose reduced during whole brain radiation, as it can increase the effective dose of the radiation and cause more damage to healthy tissue. As Dr. West has said:
“…chemotherapy drugs differ in how much they sensitize cancer cells (and normal tissues) to radiation. Some drugs, like cisplatin and etoposide, can be given at full doses and provide the right amount of radiosensitization. Taxol (paclitaxel) and Taxotere (docetaxel) can be given with radiation, but the doses must be reduced substantially, to a level that would not be considered as effective at fighting micrometastases as full doses. Gemcitabine is an incredibly potent radiosensitizer and is not considered safe in combination with radiation for lung cancer.” – http://cancergrace.org/lung/2010/08/22/introduction-to-locally-advanced…
I hope your mom's pain continues to be well-controlled and that WBR causes her as minimal an amount of side effects as possible.
JimC
Forum moderator