Lung cancer spots ... Chemo for life?

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risk80
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Joined: Fri Sep 01, 2017 12:42 am

Lung cancer spots ... Chemo for life?

Postby risk80 » Sat Sep 02, 2017 4:34 am

Hello everyone,

I have been a long time member (since 2014) and have been reading so many useful and important messages from this forum and this site has been so helpful. I know mainly most of the users here are from the States so I was little hesitant to post here since I live in South Korea now. However, on the internet I thought this website has been so helpful, so I wanted to post a message here about my mothers colon cancer treatment. So I would appreciate anyones help and advice.

So originally my mother was first diagnosed with stage 4 colon cancer with metastatsis to her lymph nodes and spots in her lungs in 2014.And immediately after her diagnosis the doctor was able to perform a surgery and was able to remove the cancer from her colon. Then after about 20 rounds of chemo, a year later they were able to remove her cancer from her lymph nodes. Then she completed 12 more rounds of chemo with Folfox and avastin and was informed by the doctor that her cancer spots on her lungs had shrank and thus was assumed that my mom had a partial remission to her lungs and was given a 7 months off with CT checkup after every 3 months. But during her last CT checkup they found out that her cancer spots in her lungs had grew in size and thus was asked to start her chemo treatment of folfox and avastin since she had a good response during her last treatment. But recently to our surprise when we asked the doctor if surgery to her lungs to remove the cancer spots was an option, the doctor stated that surgery was not an option because there are too many cancer spots on her lungs and thus was considered inoperable. Also was also told that she was not curable and that she had to do chemo for the rest of her life. So to our shock and dismay we couldn't believe what the doctor told us since they were able to remove the cancer in both her primary colon cancer and lymph nodes and there was a partial response to her lungs as well and my mother physically had recovered so well and was almost back in full without any side effects from chemo.

So i was wondering from reading other messages from the forum if we should seek out an aggressive doctor who would perform a surgery if there is a shrinkage in her cancer spot, since I have read posts in regards to this issue. Also, I was wondering if anyone has any experience with this situation before. I guess the news from the doctor few days ago still hasnt sinked in well to both of us. And since we have stayed and recieved all of her treatments at the same hospital ( St Marys Hospital) perhaps it is time to seek another opinion at a different hospital. The thought of my mother having to do chemo for the rest of her life just to survive from this terrible disease sounds so cruel because she has done and responded to her treatments so well so far. So any advice on this issue would be greatly appreciated.

Thank you.

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mypinkheaven
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Facebook Username: Sally Cunningham
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Re: Lung cancer spots ... Chemo for life?

Postby mypinkheaven » Sat Sep 02, 2017 11:17 am

How many lung mets does your mom have?

I think it would be a good idea to get a 2nd opinion. There are several treatment options for lung mets: SBRT (radiation), RFA (ablation) and proton beam therapy (a different radiation).

The hard part is finding a doctor who will consider these other treatment. In my own experience, the docs don't want to do anything but chemo with multiple mets because they assume more will pop up in time. I have an appointment at Loma Linda to see if I'm a candidate for proton beam radiation on my lung mets that are large enough. My oncologist (who is open-minded) told me to be firm with them - tell them you want the mets out. And, although, my oncologist is open-minded, he did not suggest the proton therapy. This is something I'm pursuing on my own.
MSS, KRAS Wild
9/2012 Colon Cancer IIB Lft Colectomy 0 lymph nodes 0 Chemo
10/2013 CT clear
11/15 CEA 2.7 to 4.6
11/15 Metastasis to uterus. Hysterectomy
2/16 Pelvic radiation - 25, brachytherapy - 3.
4/16 - 6/16 Xeloda
6/16 CT Several lung nodules less than 5 mm.
8/16 CT Nodules still present. Most stable. Some growth
10/16 CT Same ^. Onc recommends no tx :evil:
11/16 Transfer to UCSD Moores Cancer Center
12/16 Folfox + Avastin failed
2/17 Folfiri + Erbitux
8/17 5FU+Erbitux No 5FU bolus

Lee
Posts: 5089
Joined: Sun Apr 16, 2006 4:09 pm

Re: Lung cancer spots ... Chemo for life?

Postby Lee » Sat Sep 02, 2017 2:46 pm

Hi and welcome, we have people here from all over the world, including Hong Kong, China, etc. There was a couple that was also from Korea a few years back.

There is a Dr.Rollin in Germany who can do a surgery and remove many mets from the lungs. I believe they are also doing something similar in the UK.

Yes do get other opinions. If you can get an opinion from a major hospital or cancer treatment center.

Good luck,

Lee
rectal cancer - April 2004
46 yrs old at diagnoses
stage III C - 6/13 lymph positive
radiation - 6 weeks
surgery - August 2004/hernia repair 2014
permanent colostomy
chemo - FOLFOX
NED - 10 years and counting!

rp1954
Posts: 1174
Joined: Mon Jun 13, 2011 1:13 am

Re: Lung cancer spots ... Chemo for life?

Postby rp1954 » Sat Sep 02, 2017 3:10 pm

There are several things that are possible, depending on your circumstances.

For enough money and international travel, many lung mets may be removed in a laser surgery pioneered by Rolle. Rolle has removed up to 100 lung mets for a patient and there are several sites that have adopted or adapted his technique.

Second, chemo forever doesn't have to be a nightmare. S. Korea is one of the places with tegafur-uracil available, originally branded as UFT. Korea has generic(s). Normally in the west, UFT is considered underpowered and obsolete due to artifacts and adversary forces in its development and market deployment, along with lack of heavy duty support ($$$$). This is greatly mistaken and contrary to papers in the literature that overcame the many problems of normal chemo patients. We chose UFT because of it's extreme flexibility and low adverse impact, healthwise and financially. The flexibility is in its usage and combineability with other adjuncts to improve its performance and the ability to use UFT (with supplements and IV C) up until surgery.

My wife was on her normal (immuno)chemo treatment 12 hours before her last surgery. She restarted UFT 24 hrs later after she recovered quickly on post-surgery supplements and IV vitamin C. We use cimetidine (targeted by CA19-9) and celecoxib (Celebrex) along with immune boosting supplements and IV vitamin C as crucial components targeted for her CRC mets. She appears to have destroyed two possible lung mets her first year or so, this way. She has a high quality of life and good cancer response as long as she does enough of the supplements and drugs.

Some people may suppose my wife is "biologically lucky" with "weak" cancer cells as the "lucky survivor". This looks incorrect, her cancer markers were near the median of a very doomed type of CRC patients that in 2010 were considered essentially hopeless and quickly dead, extinct in 24 months (0%) with conventional chemo. The only survivor longer than 24 months from that era that I could find published markers on, had "double ought" markers, low CEA and CA19-9. Also, one or more of her markers bloom when she gets too low on her combined treatments e.g. doesn't get a crucial component(s). I realize now so many doctors were quietly giving up at the start, going through the motions, but not rubbing it in my face despite her initial response to our informal immune therapy (and their disbelief). Even now, to repeat her history to a fresh doctor, they start giving up half way through, literally "I'm sorry" with finality.

She looks younger than her contemporaries and basically gets away with a lot on lifestyle due to the supplements and UFT.

Finally, I know that some patients do specialized vitamins, supplements and IV vitamin C with Folfiri-Avastin with a higher quality of life and can remain on chemo longer.
watchful, active caregiver for stage IVb CC since early 2010. immuno"Chemo forever," for mCRC

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Sophy
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Joined: Fri May 27, 2011 2:46 am
Location: New Zealand

Re: Lung cancer spots ... Chemo for life?

Postby Sophy » Sat Sep 02, 2017 7:11 pm

Welcome to the board, you are doing great looking after your mother.

I have had the lung laser surgery which Lee mentions and have been NED for three years. It is expensive if you don't have insurance to pay for it but it can remove multiple mets and it can be repeated as very little lung tissue is removed.

Dr Rolle who invented the laser has retired but the hospital in Coswig and others in Germany still carry out the surgery. http://www.fachkrankenhaus-coswig.de/ze ... ntrum.html

The Royal Brompton hospital in London has one of the laser machines and also takes foreign paying patients http://www.rbhh-specialistcare.co.uk/lu ... y-tumours/

Since my surgery I have been taking long term capecitabine combined with celecoxib which is called ADAPT, there is a trial of this combination in the US. What rp1954's wife is doing sounds very promising if you can get doctors to agree to prescribe for your mother.
dx T3N1M0 Feb 11 when children age 11, 7 and 2 - now age 17, 14 and 9
Xeloda/rad March 11, LAR June 11 temp ileo
Xelox 6 rounds, NED
Lung mets Oct 13
Laser surgery Germany Jan 14. 3 mets left lung.
Laser surgery UK Jun and Aug 14 one met each lung
Aug 14 Started Xeloda and Celebrex (ADAPT) 3 year course
May 2017 CT shows still NED

Mercy110
Posts: 57
Joined: Wed Aug 16, 2017 12:13 am

Re: Lung cancer spots ... Chemo for life?

Postby Mercy110 » Sat Sep 02, 2017 10:10 pm

So sorry to hear that. I am from Hong Kong and my mum has multiple lung nodules as well. We are going to have another Pet Scan to check what they rely are.
But according to the onco, if there are lots of them properly can't be operated. I think you should search for second opinion and see if your mum's situation is rely as good as the previous doctor mentioned. Then you further consider treatment options. Hope ur mum and ur family is doing well.
Daughter of Mum age 56, NRAS-mutated
2017-05: Surgery done. Temporary stoma. Path: T4N1M0 Stage3C
2017-06: Chemo - Xeloda Rejected radio. CEA: 7.3
2017-08: CEA: 8.0 (1st) CEA: 9.8 (2nd) CT Scan: Multiple lung nodules. Stage4
2017-09: Chemo - FOLFOX + Avastin, 85% for serious diarrhea CEA: 7.0

WISH ALL MIGHTY GOD HEALS MUM WITH HIS MIRACLE

crazylife
Posts: 221
Joined: Wed Dec 30, 2015 11:29 am

Re: Lung cancer spots ... Chemo for life?

Postby crazylife » Sun Sep 03, 2017 12:43 pm

My DH was initially told inoperable as well. When we mentioned going to Dr. Rolle they changed their tune a bit and said if they see stability, meaning no new mets, they will go in and remove them. I would keep pushing until someone says yes. It seems to me like your mom has showed stability so I think next steps would be to get them out. Only reason I would think is maybe they don't think she could recover from the surgery due to age or other health issues.

Good luck!
Wife to DH, 41 years old, diagnosed 11/15
Stage 4, Mod diff, 13/24 LN, 1 liver met
Colon/liver resection at MSK, 11/15
8mm lung met (not confirmed) and enlarged lymph nodes 1/16
12 rounds of folfox (9 with Oxi) 6/16
NED - July 2016
NED - October 2016
3 lung mets - March 2017
7 lung mets, May 2017
RFA to largest met, June 2017

risk80
Posts: 4
Joined: Fri Sep 01, 2017 12:42 am

Re: Lung cancer spots ... Chemo for life?

Postby risk80 » Mon Sep 04, 2017 10:21 am

Thank you so much for your responses. Just spoke to mom on the phone few minutes ago and just telling her that there's the various options on her treatment made her feel a little better. My mom has been very down emotionally these days since the news few days ago. At this moment, the first step would be to get a second and even a third opinion and hopefully there would be a doctor willing to perform a surgery on my mother's lungs. There's a national cancer center in Seoul, which would seem like a good option to call next.

Actually last year the hospital initially decline to perform a surgery to remove the cancer on my mother's lymph nodes near her colon because they believed that there were too many and It would be too difficult to remove them all but after my mother pleaded with the doctor, he agreed and was able to successfully remove all of the cancer in her lymph nodes. Currently, that same doctor has been assigned to another St Mary's Hospital, so maybe it would be a good idea to contact that doctor again and see if he can perform the surgery again.

The laser surgery seems like a great idea as well. I am just worried about the cost though, since only way we are getting by with her treatments here is that she is getting covered by the national health care system. In terms of my mother's overall health, she is in good health currently (last weekend we walked together at a park for almost 2 hours together and she is eating healthy and well) and is 65 years old.

risk80
Posts: 4
Joined: Fri Sep 01, 2017 12:42 am

Re: Lung cancer spots ... Chemo for life?

Postby risk80 » Mon Sep 11, 2017 3:24 am

Mercy110 wrote:So sorry to hear that. I am from Hong Kong and my mum has multiple lung nodules as well. We are going to have another Pet Scan to check what they rely are.
But according to the onco, if there are lots of them properly can't be operated. I think you should search for second opinion and see if your mum's situation is rely as good as the previous doctor mentioned. Then you further consider treatment options. Hope ur mum and ur family is doing well.


HI Mercy,

I have tried to respond to your message but I don't see any functions which allows me to reply back to your message, it also states I may need to post more messages or something to send out PM's. Strange.

Anyways, just to answer few of your questions. My mom had mild side effects to Avastin and Folfox, such as numbness to her fingers, intolerance to cold air, and fatigue. During her chemo sessions, my mom will have nausea during her treatments. But overall, she did OK and manage to recover quickly and rather well whenever she was given a chemo break ( two periods of 9 months then a year later of 7 months). My mom has completed close to 30 rounds of chemo and recently, she just completed another round last week and she responded rather well again. Exercising and eating normally these days. Also, DR. informed us that since she has responded well to Avastin she will continue to receive this treatment. But currently, we are looking into other options as well, especially the laser treatment. As of now, in Korea we haven't found any hospital using this treatment , but we're still in the early phases of looking.

If you have any additional questions, for now, you can just write me an email at josephkang704@gmail.com
hopefully I can help. Good luck to you and especially your mother and God bless~

Mercy110
Posts: 57
Joined: Wed Aug 16, 2017 12:13 am

Re: Lung cancer spots ... Chemo for life?

Postby Mercy110 » Tue Sep 12, 2017 10:29 am

risk80 wrote:
Mercy110 wrote:So sorry to hear that. I am from Hong Kong and my mum has multiple lung nodules as well. We are going to have another Pet Scan to check what they rely are.
But according to the onco, if there are lots of them properly can't be operated. I think you should search for second opinion and see if your mum's situation is rely as good as the previous doctor mentioned. Then you further consider treatment options. Hope ur mum and ur family is doing well.


HI Mercy,

I have tried to respond to your message but I don't see any functions which allows me to reply back to your message, it also states I may need to post more messages or something to send out PM's. Strange.

Anyways, just to answer few of your questions. My mom had mild side effects to Avastin and Folfox, such as numbness to her fingers, intolerance to cold air, and fatigue. During her chemo sessions, my mom will have nausea during her treatments. But overall, she did OK and manage to recover quickly and rather well whenever she was given a chemo break ( two periods of 9 months then a year later of 7 months). My mom has completed close to 30 rounds of chemo and recently, she just completed another round last week and she responded rather well again. Exercising and eating normally these days. Also, DR. informed us that since she has responded well to Avastin she will continue to receive this treatment. But currently, we are looking into other options as well, especially the laser treatment. As of now, in Korea we haven't found any hospital using this treatment , but we're still in the early phases of looking.

If you have any additional questions, for now, you can just write me an email at josephkang704@gmail.com
hopefully I can help. Good luck to you and especially your mother and God bless~



Thank you for your reply. My mum has come back home yesterday from hospital. She is very tired and has no appetite. Also a bit down coz she cant imagine there are at least 11 more rounds to go. Hope she recovers and responds as good as your mum does. Thank you for the email address as well. Prayers to you all.
Daughter of Mum age 56, NRAS-mutated
2017-05: Surgery done. Temporary stoma. Path: T4N1M0 Stage3C
2017-06: Chemo - Xeloda Rejected radio. CEA: 7.3
2017-08: CEA: 8.0 (1st) CEA: 9.8 (2nd) CT Scan: Multiple lung nodules. Stage4
2017-09: Chemo - FOLFOX + Avastin, 85% for serious diarrhea CEA: 7.0

WISH ALL MIGHTY GOD HEALS MUM WITH HIS MIRACLE

risk80
Posts: 4
Joined: Fri Sep 01, 2017 12:42 am

Re: Lung cancer spots ... Chemo for life?

Postby risk80 » Thu Sep 14, 2017 8:30 am

Mercy110 wrote:
risk80 wrote:
Mercy110 wrote:So sorry to hear that. I am from Hong Kong and my mum has multiple lung nodules as well. We are going to have another Pet Scan to check what they rely are.
But according to the onco, if there are lots of them properly can't be operated. I think you should search for second opinion and see if your mum's situation is rely as good as the previous doctor mentioned. Then you further consider treatment options. Hope ur mum and ur family is doing well.


HI Mercy,

I have tried to respond to your message but I don't see any functions which allows me to reply back to your message, it also states I may need to post more messages or something to send out PM's. Strange.

Anyways, just to answer few of your questions. My mom had mild side effects to Avastin and Folfox, such as numbness to her fingers, intolerance to cold air, and fatigue. During her chemo sessions, my mom will have nausea during her treatments. But overall, she did OK and manage to recover quickly and rather well whenever she was given a chemo break ( two periods of 9 months then a year later of 7 months). My mom has completed close to 30 rounds of chemo and recently, she just completed another round last week and she responded rather well again. Exercising and eating normally these days. Also, DR. informed us that since she has responded well to Avastin she will continue to receive this treatment. But currently, we are looking into other options as well, especially the laser treatment. As of now, in Korea we haven't found any hospital using this treatment , but we're still in the early phases of looking.

If you have any additional questions, for now, you can just write me an email at josephkang704@gmail.com
hopefully I can help. Good luck to you and especially your mother and God bless~



Thank you for your reply. My mum has come back home yesterday from hospital. She is very tired and has no appetite. Also a bit down coz she cant imagine there are at least 11 more rounds to go. Hope she recovers and responds as good as your mum does. Thank you for the email address as well. Prayers to you all.


Every rounds are different. There were rounds where my mom got really fatigued and all she did was sleep after her treatment. But if I can remember, when she first got her treatment, I think her 5th or 6th round was the most difficult rounds for her. But usually, the first week after each treatment, she would normally just stay home and rest and only do house chores and with a very short walking of 5 to 10 minutes the max. And from there she would gradually increase her walking minutes as each day would go by. It is usually the second week where she regains her appetite and her normal walking exercise for an hour. Hang in there, as you will see, there are going to be some good rounds where she does OK and some bad ones as well. It's normal for most people doing chemo.

The most important thing is that your mom will be able to have some appetite and not lose too much weight and do some light walking if she can, so that her body can somewhat recover and be physically ready for the next round. Also, If the DR. gives an OK, maybe they can push back her treatment day a week later, that's what my mom did so that she can get her body ready for the next chemo round. Anyways, hang in there and good luck, and just remember every chemo rounds can have different reaction to people~

Mercy110
Posts: 57
Joined: Wed Aug 16, 2017 12:13 am

Re: Lung cancer spots ... Chemo for life?

Postby Mercy110 » Thu Sep 14, 2017 7:37 pm

Thank you. My mum has come back home for 3days but she is suffering from diarrhea these days and that rely troubles her since she feels the discomfort quite often. She is also having a stoma which made her annoyed. Hope everything's fine with her and your mum.
Daughter of Mum age 56, NRAS-mutated
2017-05: Surgery done. Temporary stoma. Path: T4N1M0 Stage3C
2017-06: Chemo - Xeloda Rejected radio. CEA: 7.3
2017-08: CEA: 8.0 (1st) CEA: 9.8 (2nd) CT Scan: Multiple lung nodules. Stage4
2017-09: Chemo - FOLFOX + Avastin, 85% for serious diarrhea CEA: 7.0

WISH ALL MIGHTY GOD HEALS MUM WITH HIS MIRACLE


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