Stage4 Mum with Multiple Lung Mets

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Mercy110
Posts: 107
Joined: Wed Aug 16, 2017 12:13 am

Stage4 Mum with Multiple Lung Mets

Postby Mercy110 » Wed Aug 30, 2017 3:47 am

We have seen an onco today. The Onco read through my mum's report and he thinks that the lung nodules are LUNG METS. We have also check KRAS genes to see if there are more drugs can be used for targeted therapy. Finger crossed.He suggested my mum's situation is not so good, so he recommended using Avastin. Yet it costs HKD 30000 or above in private clinic, so we decided trying IRINOTECAN with TS-1 first.

These meds are very new to us because they are rare in public hospitals. The onco said TS-1 is a med from Japan that newly introduced to HK. Any thoughts on these med? Are these drugs being used in targeted therapy? Any stage 4 patients have similar experience? Thanks a lot.
Daughter of Mum age 56, NRAS-mutate Q61R
2017-05: Surgery with stoma. T4N1M0. Stage3C. Xeloda No Radio. CEA: 7.3, 8.0, 9.8 CT Scan: Multiple lung nodules. Stage4.
2017-09: 85% FOLFOX + Avastin CEA: 7.0, 4.7 (10/10), 3.7 (11/10), 2.9 (12/3), 2.2 (12/21), 2.4 (01/09), 3.4 (2/24), 2.6 (3/9), 3.6 (5/24), 19.2 (8/16), 22 (8/31), 24.9 (9/18), 27.7 (10/9)
2017-11: Stable CT
2018-03 to 05: Folfox Allergy, 5 months chemo break
2018-08: Folfiri started

WISH ALL MIGHTY GOD HEALS MUM WITH HIS MIRACLE

veckon
Posts: 131
Joined: Thu Jul 27, 2017 7:44 am

Re: Stage4 Mum with Multiple Lung Mets

Postby veckon » Wed Aug 30, 2017 4:42 am

Mercy110 wrote:We have seen an onco today. The Onco read through my mum's report and he thinks that the lung nodules are LUNG METS. We have also check KRAS genes to see if there are more drugs can be used for targeted therapy. Finger crossed.He suggested my mum's situation is not so good, so he recommended using Avastin. Yet it costs HKD 30000 or above in private clinic, so we decided trying IRINOTECAN with TS-1 first.

These meds are very new to us because they are rare in public hospitals. The onco said TS-1 is a med from Japan that newly introduced to HK. Any thoughts on these med? Are these drugs being used in targeted therapy? Any stage 4 patients have similar experience? Thanks a lot.


Is there a way you could get public health coverage? Not getting treatment due to cost is really sad. Even in USA there are public options if you cannot afford treatment. Isn’t China communist?
27 yo male
Metastatic rectal cancer diagnosed 12/16
Liver metastases and peritoneal carcinomatosis
Lynch syndrome, MSI-H
Failed liver resection 3/17
FOLFOX6 12/16 - 05/17
Keytruda 5/17 - present
@Memorial Sloan Kettering

veckon
Posts: 131
Joined: Thu Jul 27, 2017 7:44 am

Re: Stage4 Mum with Multiple Lung Mets

Postby veckon » Wed Aug 30, 2017 4:42 am

Mercy110 wrote:We have seen an onco today. The Onco read through my mum's report and he thinks that the lung nodules are LUNG METS. We have also check KRAS genes to see if there are more drugs can be used for targeted therapy. Finger crossed.He suggested my mum's situation is not so good, so he recommended using Avastin. Yet it costs HKD 30000 or above in private clinic, so we decided trying IRINOTECAN with TS-1 first.

These meds are very new to us because they are rare in public hospitals. The onco said TS-1 is a med from Japan that newly introduced to HK. Any thoughts on these med? Are these drugs being used in targeted therapy? Any stage 4 patients have similar experience? Thanks a lot.


Is there a way you could get public health coverage? Not getting treatment due to cost is really sad. Even in USA there are public options if you cannot afford treatment. Isn’t China communist?
27 yo male
Metastatic rectal cancer diagnosed 12/16
Liver metastases and peritoneal carcinomatosis
Lynch syndrome, MSI-H
Failed liver resection 3/17
FOLFOX6 12/16 - 05/17
Keytruda 5/17 - present
@Memorial Sloan Kettering

Mercy110
Posts: 107
Joined: Wed Aug 16, 2017 12:13 am

Re: Stage4 Mum with Multiple Lung Mets

Postby Mercy110 » Wed Aug 30, 2017 4:50 am

veckon wrote:
Mercy110 wrote:We have seen an onco today. The Onco read through my mum's report and he thinks that the lung nodules are LUNG METS. We have also check KRAS genes to see if there are more drugs can be used for targeted therapy. Finger crossed.He suggested my mum's situation is not so good, so he recommended using Avastin. Yet it costs HKD 30000 or above in private clinic, so we decided trying IRINOTECAN with TS-1 first.

These meds are very new to us because they are rare in public hospitals. The onco said TS-1 is a med from Japan that newly introduced to HK. Any thoughts on these med? Are these drugs being used in targeted therapy? Any stage 4 patients have similar experience? Thanks a lot.


Is there a way you could get public health coverage? Not getting treatment due to cost is really sad. Even in USA there are public options if you cannot afford treatment. Isn’t China communist?



Hong Kong has a lot of differences with China in terms of economic system. We are similar to western countries, actually (EXTREMELY-FREE MARKET). Do you mean it is better to use Avastin?
Avastin is also available in public hospitals but patients still have to afford it by themselves. Targeted Therapy is not subsidized treatment in HK. HKD20000-30000 per month is a must. There are subsidized schemes but they have very strict requirements. We properly still have to handle quite a large amount of expense, unless the family is broken, divorced or nearly no savings. At least that's why I heard.
Daughter of Mum age 56, NRAS-mutate Q61R
2017-05: Surgery with stoma. T4N1M0. Stage3C. Xeloda No Radio. CEA: 7.3, 8.0, 9.8 CT Scan: Multiple lung nodules. Stage4.
2017-09: 85% FOLFOX + Avastin CEA: 7.0, 4.7 (10/10), 3.7 (11/10), 2.9 (12/3), 2.2 (12/21), 2.4 (01/09), 3.4 (2/24), 2.6 (3/9), 3.6 (5/24), 19.2 (8/16), 22 (8/31), 24.9 (9/18), 27.7 (10/9)
2017-11: Stable CT
2018-03 to 05: Folfox Allergy, 5 months chemo break
2018-08: Folfiri started

WISH ALL MIGHTY GOD HEALS MUM WITH HIS MIRACLE

veckon
Posts: 131
Joined: Thu Jul 27, 2017 7:44 am

Re: Stage4 Mum with Multiple Lung Mets

Postby veckon » Wed Aug 30, 2017 5:11 am

Interesting, so it seems like HK is more like the USA health insurance wise. But I figured if even we have a public option, surely HK would. But maybe not. $3000/month after insurance is pretty insane and most people can’t afford that. I don’t know what to tell you other than listen to your doctors. If they think a medication is worth trying first, there is a reason statistically. I know personally my treatment is saving my life and would cost HK 150000 or more a month, putting it firmly out of reach. But without it I would be suffering and awaiting death right now.
27 yo male
Metastatic rectal cancer diagnosed 12/16
Liver metastases and peritoneal carcinomatosis
Lynch syndrome, MSI-H
Failed liver resection 3/17
FOLFOX6 12/16 - 05/17
Keytruda 5/17 - present
@Memorial Sloan Kettering

Mercy110
Posts: 107
Joined: Wed Aug 16, 2017 12:13 am

Re: Stage4 Mum with Multiple Lung Mets

Postby Mercy110 » Wed Aug 30, 2017 6:04 am

veckon wrote:Interesting, so it seems like HK is more like the USA health insurance wise. But I figured if even we have a public option, surely HK would. But maybe not. $3000/month after insurance is pretty insane and most people can’t afford that. I don’t know what to tell you other than listen to your doctors. If they think a medication is worth trying first, there is a reason statistically. I know personally my treatment is saving my life and would cost HK 150000 or more a month, putting it firmly out of reach. But without it I would be suffering and awaiting death right now.


Yes, medical expense in HK is the second most expensive, the first is US. We did not buy any medical insurance in advance as grassroot families in HK surely do not consider these schemes. My parents' consideration is how to educate their daughter to university instead of buying medical insurance. We would stick with the chemo first, hope it works. If it does not, then we start Avastin, though we dont know how many rounds we can afford.

I saw your med from your signature. Keytruda is only available in very few private clinics in HK. I have checked the cost and I guess this is a med that we can only afford once or twice by ourselves. Yet I saw Keytruda did contribute to some miracles before. Wish you all the best.
Daughter of Mum age 56, NRAS-mutate Q61R
2017-05: Surgery with stoma. T4N1M0. Stage3C. Xeloda No Radio. CEA: 7.3, 8.0, 9.8 CT Scan: Multiple lung nodules. Stage4.
2017-09: 85% FOLFOX + Avastin CEA: 7.0, 4.7 (10/10), 3.7 (11/10), 2.9 (12/3), 2.2 (12/21), 2.4 (01/09), 3.4 (2/24), 2.6 (3/9), 3.6 (5/24), 19.2 (8/16), 22 (8/31), 24.9 (9/18), 27.7 (10/9)
2017-11: Stable CT
2018-03 to 05: Folfox Allergy, 5 months chemo break
2018-08: Folfiri started

WISH ALL MIGHTY GOD HEALS MUM WITH HIS MIRACLE

User avatar
Maia
Posts: 2443
Joined: Fri Aug 24, 2012 8:00 am

Re: Stage4 Mum with Multiple Lung Mets

Postby Maia » Wed Aug 30, 2017 11:17 am

Mercy110 wrote:I saw your med from your signature. Keytruda is only available in very few private clinics in HK.


In HK, you have an ongoing trial with a drug that is the Novartis equivalent of Keytruda, PDR001, also an anti PD-1, *combined* with other immunotherapy. Your mom is probably MSS, and Keytruda or other immunotherapy on its own is unlikely to work. BUT that drug, combined with other, like this one --an anti LAG3--, might work. Hence, this trial might be better than having just Keytruda alone.

https://clinicaltrials.gov/ct2/show/NCT02460224
You would need to contact
Novartis.email@novartis.com

putting this in the email subject:

NCT02460224, CLAG525X2101C, Safety and Efficacy of LAG525 Single Agent and in Combination With PDR001 in Patients With Advanced Malignancies

and explaining your mom's case and asking them for guidance --like, in which institution in Hong Kong this trial is available.

If your mom is eligible for that trial --explain to her that it would be two immunotherapies, no chemotherapy--, it would be without cost for her.

https://www.ncbi.nlm.nih.gov/pubmed/22186141

LMighty
Posts: 98
Joined: Sun Aug 28, 2016 6:16 am
Location: Hong Kong

Re: Stage4 Mum with Multiple Lung Mets

Postby LMighty » Wed Aug 30, 2017 11:51 am

Hi Mercy110,

I think it would help to check whether your mom is MSS or MSI-H, if you haven't already. It is the primary predictor of the efficacy of immunotherapy. You may also want to talk to your onc about the possibility of referring your mom to the Novartis clinical trial, now or in the future if necessary.

My mom is also battling bilateral lung mets. You may refer to my signature. Failing all first line drugs in less than a year, it was a losing battle until we adopted the current regimen. We are blessed to have a VERY supportive and accommodating onc who really goes out of his way to try a novel regimen. Remember every case is different -- chances are that chemo works great for your mom.

Good luck!
Supporter to my mom (64 yr); KRAS wild type; MSS

2012: DX Stage I, rectal cancer; resection and colostomy
5/16: DX Stage III, mets found; right groin lymph node and soft tissue
5-6/16: Radiation + Xeloda
7/16: DX Stage IV, pleural effusion; cancer cells found in fluid
7-12/16: Xelox + Avastin X 6
1/17: Clean PET scan, NED
2/17: Pleural effusion; recurrence
4/17: Iri + Erb X 3
5/17: Ascites; Chemo failed
6/17: Keytruda X 1
7/17: TECENTRIQ (atezolizumab) + COTELLIC (cobimetinib)
9/17: At peace

Mercy110
Posts: 107
Joined: Wed Aug 16, 2017 12:13 am

Re: Stage4 Mum with Multiple Lung Mets

Postby Mercy110 » Wed Aug 30, 2017 7:38 pm

Maia wrote:
Mercy110 wrote:I saw your med from your signature. Keytruda is only available in very few private clinics in HK.


In HK, you have an ongoing trial with a drug that is the Novartis equivalent of Keytruda, PDR001, also an anti PD-1, *combined* with other immunotherapy. Your mom is probably MSS, and Keytruda or other immunotherapy on its own is unlikely to work. BUT that drug, combined with other, like this one --an anti LAG3--, might work. Hence, this trial might be better than having just Keytruda alone.

https://clinicaltrials.gov/ct2/show/NCT02460224
You would need to contact
Novartis.email@novartis.com

putting this in the email subject:

NCT02460224, CLAG525X2101C, Safety and Efficacy of LAG525 Single Agent and in Combination With PDR001 in Patients With Advanced Malignancies

and explaining your mom's case and asking them for guidance --like, in which institution in Hong Kong this trial is available.

If your mom is eligible for that trial --explain to her that it would be two immunotherapies, no chemotherapy--, it would be without cost for her.

https://www.ncbi.nlm.nih.gov/pubmed/22186141



Thanks a lot for the information. But my mum hasn't try targeted therapy yet, I wonder is there an order of treatments. I hv asked the onco abt immunotherapy as well, but he told me it is a treatment used after failing all possible meds like targeted drugs. So I rely don't know if this would be a good time for trials. I mean would it be too early to be trial...Thanks anyway for letting me know there is institution in Hk working on this.
Daughter of Mum age 56, NRAS-mutate Q61R
2017-05: Surgery with stoma. T4N1M0. Stage3C. Xeloda No Radio. CEA: 7.3, 8.0, 9.8 CT Scan: Multiple lung nodules. Stage4.
2017-09: 85% FOLFOX + Avastin CEA: 7.0, 4.7 (10/10), 3.7 (11/10), 2.9 (12/3), 2.2 (12/21), 2.4 (01/09), 3.4 (2/24), 2.6 (3/9), 3.6 (5/24), 19.2 (8/16), 22 (8/31), 24.9 (9/18), 27.7 (10/9)
2017-11: Stable CT
2018-03 to 05: Folfox Allergy, 5 months chemo break
2018-08: Folfiri started

WISH ALL MIGHTY GOD HEALS MUM WITH HIS MIRACLE

Mercy110
Posts: 107
Joined: Wed Aug 16, 2017 12:13 am

Re: Stage4 Mum with Multiple Lung Mets

Postby Mercy110 » Wed Aug 30, 2017 7:44 pm

LMighty wrote:Hi Mercy110,

I think it would help to check whether your mom is MSS or MSI-H, if you haven't already. It is the primary predictor of the efficacy of immunotherapy. You may also want to talk to your onc about the possibility of referring your mom to the Novartis clinical trial, now or in the future if necessary.

My mom is also battling bilateral lung mets. You may refer to my signature. Failing all first line drugs in less than a year, it was a losing battle until we adopted the current regimen. We are blessed to have a VERY supportive and accommodating onc who really goes out of his way to try a novel regimen. Remember every case is different -- chances are that chemo works great for your mom.

Good luck!



Hello. I would like to ask if your mum started using Avastin for treatments upon knowing there's lung mets? Coz we are not sure abt the chemo drugs being introduced. As far as I know, most people use Avastin for stage 4 patients. Just wondering if my mum is going to waste her time for chemo alone..
Daughter of Mum age 56, NRAS-mutate Q61R
2017-05: Surgery with stoma. T4N1M0. Stage3C. Xeloda No Radio. CEA: 7.3, 8.0, 9.8 CT Scan: Multiple lung nodules. Stage4.
2017-09: 85% FOLFOX + Avastin CEA: 7.0, 4.7 (10/10), 3.7 (11/10), 2.9 (12/3), 2.2 (12/21), 2.4 (01/09), 3.4 (2/24), 2.6 (3/9), 3.6 (5/24), 19.2 (8/16), 22 (8/31), 24.9 (9/18), 27.7 (10/9)
2017-11: Stable CT
2018-03 to 05: Folfox Allergy, 5 months chemo break
2018-08: Folfiri started

WISH ALL MIGHTY GOD HEALS MUM WITH HIS MIRACLE

LMighty
Posts: 98
Joined: Sun Aug 28, 2016 6:16 am
Location: Hong Kong

Re: Stage4 Mum with Multiple Lung Mets

Postby LMighty » Thu Aug 31, 2017 12:11 am

Hi Mercy110,

Yes she did. We were told there was 40% chance for chemo to work and adding Avastin or Erbitux would boost the chance to around 70%. If it works for your mom and eventually eliminates all evidence of disease, you may also consider doing "maintenance" chemo which would probably be low dose of Xeloda + Avastin, to further keep the disease from coming back.
Supporter to my mom (64 yr); KRAS wild type; MSS

2012: DX Stage I, rectal cancer; resection and colostomy
5/16: DX Stage III, mets found; right groin lymph node and soft tissue
5-6/16: Radiation + Xeloda
7/16: DX Stage IV, pleural effusion; cancer cells found in fluid
7-12/16: Xelox + Avastin X 6
1/17: Clean PET scan, NED
2/17: Pleural effusion; recurrence
4/17: Iri + Erb X 3
5/17: Ascites; Chemo failed
6/17: Keytruda X 1
7/17: TECENTRIQ (atezolizumab) + COTELLIC (cobimetinib)
9/17: At peace

Mercy110
Posts: 107
Joined: Wed Aug 16, 2017 12:13 am

Re: Stage4 Mum with Multiple Lung Mets

Postby Mercy110 » Thu Aug 31, 2017 12:23 am

LMighty wrote:Hi Mercy110,

Yes she did. We were told there was 40% chance for chemo to work and adding Avastin or Erbitux would boost the chance to around 70%. If it works for your mom and eventually eliminates all evidence of disease, you may also consider doing "maintenance" chemo which would probably be low dose of Xeloda + Avastin, to further keep the disease from coming back.



IC...According to your case, chemo with Avastin could only preventing worsen situation in months? If that's the case it would be difficult...
And I expect patient with multiple lung nodules that are not operational actually could not being healed easily? Coz most of the successful cases seem to be liver mets with surgery.
Daughter of Mum age 56, NRAS-mutate Q61R
2017-05: Surgery with stoma. T4N1M0. Stage3C. Xeloda No Radio. CEA: 7.3, 8.0, 9.8 CT Scan: Multiple lung nodules. Stage4.
2017-09: 85% FOLFOX + Avastin CEA: 7.0, 4.7 (10/10), 3.7 (11/10), 2.9 (12/3), 2.2 (12/21), 2.4 (01/09), 3.4 (2/24), 2.6 (3/9), 3.6 (5/24), 19.2 (8/16), 22 (8/31), 24.9 (9/18), 27.7 (10/9)
2017-11: Stable CT
2018-03 to 05: Folfox Allergy, 5 months chemo break
2018-08: Folfiri started

WISH ALL MIGHTY GOD HEALS MUM WITH HIS MIRACLE

LMighty
Posts: 98
Joined: Sun Aug 28, 2016 6:16 am
Location: Hong Kong

Re: Stage4 Mum with Multiple Lung Mets

Postby LMighty » Thu Aug 31, 2017 7:14 am

Mercy110 wrote:IC...According to your case, chemo with Avastin could only preventing worsen situation in months? If that's the case it would be difficult...
And I expect patient with multiple lung nodules that are not operational actually could not being healed easily? Coz most of the successful cases seem to be liver mets with surgery.


Everyone is different and there is no guarantee. What did not work on a patient can work well on the other. There are many on this board who tolerated chemo well and keep the disease at bay for years and counting.

Ignore the stats and numbers. It either works or it doesn't, so I always remind myself the chances are always 50/50. Equip yourself with knowledge of future outcomes and possible treatment options. Do not lose hope.
Supporter to my mom (64 yr); KRAS wild type; MSS

2012: DX Stage I, rectal cancer; resection and colostomy
5/16: DX Stage III, mets found; right groin lymph node and soft tissue
5-6/16: Radiation + Xeloda
7/16: DX Stage IV, pleural effusion; cancer cells found in fluid
7-12/16: Xelox + Avastin X 6
1/17: Clean PET scan, NED
2/17: Pleural effusion; recurrence
4/17: Iri + Erb X 3
5/17: Ascites; Chemo failed
6/17: Keytruda X 1
7/17: TECENTRIQ (atezolizumab) + COTELLIC (cobimetinib)
9/17: At peace

veckon
Posts: 131
Joined: Thu Jul 27, 2017 7:44 am

Re: Stage4 Mum with Multiple Lung Mets

Postby veckon » Thu Aug 31, 2017 7:30 am

So I've been going through the Hong Kong Department of Health website to see if I could find any information to help you reduce these costs. One tool they have is a drug search engine that lets you find out exactly how HK classifies various drugs. I found both Avastin and Pembrolizumab (Keytruda) in there. Additionally it looks like all you need to qualify for care at any public hospital or outpatient clinic is to be a permanent resident of HK, you do not even have to be a citizen of China who resides there. Then you can get any medication your oncologist prescribes for HK 10. Is there some reason you cannot make use of these public health facilities? I mean, you may have to wait a long time before infusions and appointments, but overall it could help with the overwhelming financial burden. I will keep my eyes open for more information as well.
27 yo male
Metastatic rectal cancer diagnosed 12/16
Liver metastases and peritoneal carcinomatosis
Lynch syndrome, MSI-H
Failed liver resection 3/17
FOLFOX6 12/16 - 05/17
Keytruda 5/17 - present
@Memorial Sloan Kettering

Mercy110
Posts: 107
Joined: Wed Aug 16, 2017 12:13 am

Re: Stage4 Mum with Multiple Lung Mets

Postby Mercy110 » Thu Aug 31, 2017 10:55 am

veckon wrote:So I've been going through the Hong Kong Department of Health website to see if I could find any information to help you reduce these costs. One tool they have is a drug search engine that lets you find out exactly how HK classifies various drugs. I found both Avastin and Pembrolizumab (Keytruda) in there. Additionally it looks like all you need to qualify for care at any public hospital or outpatient clinic is to be a permanent resident of HK, you do not even have to be a citizen of China who resides there. Then you can get any medication your oncologist prescribes for HK 10. Is there some reason you cannot make use of these public health facilities? I mean, you may have to wait a long time before infusions and appointments, but overall it could help with the overwhelming financial burden. I will keep my eyes open for more information as well.



It is very kind of you to search these information for us. We would definitely ask the onco in the coming week. We know there are government subsidised scheme for targeted drugs,but they are very difficult to apply. Still we are going to try. Hope miracles do happen.
Daughter of Mum age 56, NRAS-mutate Q61R
2017-05: Surgery with stoma. T4N1M0. Stage3C. Xeloda No Radio. CEA: 7.3, 8.0, 9.8 CT Scan: Multiple lung nodules. Stage4.
2017-09: 85% FOLFOX + Avastin CEA: 7.0, 4.7 (10/10), 3.7 (11/10), 2.9 (12/3), 2.2 (12/21), 2.4 (01/09), 3.4 (2/24), 2.6 (3/9), 3.6 (5/24), 19.2 (8/16), 22 (8/31), 24.9 (9/18), 27.7 (10/9)
2017-11: Stable CT
2018-03 to 05: Folfox Allergy, 5 months chemo break
2018-08: Folfiri started

WISH ALL MIGHTY GOD HEALS MUM WITH HIS MIRACLE


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