Progression of Symptoms With Lung Mets

mojogirl67

Thanks to all of you for weighing in on my results from Charleston. I have some choices to make but for now, I am still leaning towards no more chemo. My oncologist told me that he didn't forsee the mets causing me any issues six months from now or even a year from now. I am wondering if anyone here has had experience with what takes places with no treatment and the growth rate and symptoms that begin to show. The answers and scenarios you find online are all over the board. I realize everyone responds differently ,but would appreciate anything you have to share. The chemo to me is just a gamble, same as not doing anything. Spending my time at infusions and at doctor visits doesn't seem worthwhile if it isn't going to make a huge hill of beans either way. Plus add in the tiredness and the other side effects coupled with the side effects of the medicines to combat those. With my liver already compromised, and knowing that chemo causes liver damage, doing chemo doesn't make sense AT ALL. I honestly think I just want "clean" time to feel like me and do some things I want while I feel like my body belongs to me. "Controlled poisoning" of my other body systems just doesn't make any sense to me with all due respect to others who choose to go down that path. I have an appointment with a Chinese Medicine doctor to get started with some other therapies to combat symptoms and issues as they appear. I realize "nothing" is a guaranteed treatment but this approach gives me the peace I need. Nothing is easy about this disease. I will be open and honest as I can be until the end with this in hopes that it sheds some clarity on a lot of unknowns. By the same token, I never want to take hope from another individual or discourage them. This is very much an individual journey if you find yourself on this road. Wishing each of you light, love and strength to take another step....Hugs, M

NewHere

Progression

My mets came back and I was able to hold off going back on chemo for almost a year from the time they were seen until I had no choice.  I was in an immunotherapy trial during that about 6 months of the year (which seemed to do nothing) At the year point there was a big change between two scans that were three months apart, rapid change in number of tumors in lungs, plus tumors in my back and spine started becomning problems (they were small and really not mentioned before on scans) -  very painful  In terms of the lungs I had no real symtoms at that point.  Maybe ocassional shortness of breath, but nothing that I remeber as being an issue - probably no different that many people get when going up the stairs where sometimes any person gets SOB.  I also used TCM and other things while i had time.  (Got RIPPED off by one TCM person, so be careful.)

It was the scans plus the tumors in my spine, lymph nodes and back muscles which made it something that I had to do.  My oncologist's goal during the year before I had to go back on chemo was to keep me off as long as possible and that when it was dangerous (structual damage from tumors, etc.) made the decsion.

For the last year I have been on FOLFRI plus Avastin.  Was able to go to three week cycles.  So though it was not easy, and tired built up, it was was a bad 5-7 days at most.  Otherwise not a huge impact other than the tired that built up (towards last month maybe some muscle aches/spasms from chemo or could be from the spine tumors)   But I did many races during the year on chemo, including 1/.2 marathon and various triathlons, and it bought me time with the hope of the next break through.  (The one thing I would highly recommend is exercising and getting cardio in as much as you can.  It has kept me off the couch on oxygen in all likelihood and kept symptoms down despite what scans are showing going on inside my body.)

Last week I found out the chemo stopped working it looks like.  Enough that my oncologist said no more FOLOFRI.  And that other chemo will be probably not be effective and time to see if I can get in a trial.  If not, will try some other chemos though they are suppossed to be worse.  And not keep me alive that much longer compared to possible side effects.  My oncologist has been great in trying to make sure I have a life around all of this.  And it was kind of at the point that the hail mary of a trial is worth a shot before going to the next thing.  

Basically right now I would give anything to be able to go to my next FOLFORI session and keep on getting reports saying everything was stable - the few days of feeling crappy, the tired and couple of other minor things from the chemo were WAY more than offset by having good days and doing good things/having fun. (I have been overall pretty good with handling chemo - or at least ignore the bad part a bit )   I am not betting on seeing next New Year's.  But i am going to keep on trying as much as I can.

 

beaumontdave

I can't help on lung met

I can't help on lung met progression, but I did read an article that indicated the Keto Diet may help starve cancer cells. A state of ketosis forces the body to convert fat to energy, and the fuel from that doesn't feed the cancer cells the way sugars do. Wish I had a reference to give, but you could "google it if you're curious. You don't look as though you need to diet in your pix, and carrying a little extra weight is safer strategy than being rail-thin, but you could keep the calorie level up, enjoy protein and whatever else the diet allows, and see what the effects are. Just a thought, and I hope you get the answers you need, along with some good, peaceful times during these holidays, and beyond..........................................Dave

SandiaBuddy

No experience

I have no knowledge or experience in this area, but I want to let you know that I stand behind you and support you in your decisions and challenges.

Slow-runner

Liver damage not the lung mets that proved fatal

My husband just passed on November 27.  He was diagnosed in August 2017. He had a tumor in the ascending colon with liver, lung, peritoneal and lymph node involvment. His only symptom was shortness of breath when running and a small pain in his side. Lung mets were small, but did grow but never enough to alarm the doctor. Buck's initial CEA was 1200, the lowest we ever got was 115. Buck had all the therapies, folfox, folfiri, oral meds, chemoembolization to the liver (pretty successful), was on a clinical trial for immunotherapy.  Buck developed an intestinal blockage, more like a shutdown, in the Spring of 2019, also a liver abscess. At this time our doc told us we were out of options, suggestioned hospice.  Buck was not ready. I prayed so hard for one more summer;  he got it.  His bowel function returned after a gtube, abscess drain and TPN. He went back on chemo. Buck enjoyed the summer, he had rehabed a shore house we had purchased the winter before being diagnosed and got to spend most of the summer there. In October he basically went into liver failure, his bilirubin was 19, he was sooo orange, some mental changes also.  Drains were placed in the liver to bring down the bilirubin but then he started taking on water like the Titanic and that was when he put up the white flag. He would get his abdomen drained weekly but... In November he was in distributive shock, we went to our community hospital (had been getting treatment in the city). Very good experience at the community hospital, Buck went onto hospice service. Our daughter was to be married this December, she got married in his hospital room, it was his last fully conscious day. Buck's passing was so peaceful. He had the chance to have a heart to heart with all our children (all grown).  Buck used these past two years to their full advantage.  He tolerated chemo so well, yes there were down days but as long as he knew they would be followed by good days, he was okay with that.  He saw this disease as a blessing, said it got rid of the noise in his life, blessed that it happened when our kids were grown (3 had gotten married in these 2 years). He truely appreciated every day. Sorry for rambling. What I really wonder is if we had not done the clinical trial would things be different.  In my mind I associate the trial with the liver abscess. The liver was doing fine before the trial.  We entered the trial to address the lung mets which were not responding to the chemo. I don't know.  Not worth questioning.  We had great care at Penn, really have no regrets. Was just hoping for more time. In the end, his passing was so peaceful, he was ready.

Annabelle41415

Slow-runner said:

Liver damage not the lung mets that proved fatal

My husband just passed on November 27.  He was diagnosed in August 2017. He had a tumor in the ascending colon with liver, lung, peritoneal and lymph node involvment. His only symptom was shortness of breath when running and a small pain in his side. Lung mets were small, but did grow but never enough to alarm the doctor. Buck's initial CEA was 1200, the lowest we ever got was 115. Buck had all the therapies, folfox, folfiri, oral meds, chemoembolization to the liver (pretty successful), was on a clinical trial for immunotherapy.  Buck developed an intestinal blockage, more like a shutdown, in the Spring of 2019, also a liver abscess. At this time our doc told us we were out of options, suggestioned hospice.  Buck was not ready. I prayed so hard for one more summer;  he got it.  His bowel function returned after a gtube, abscess drain and TPN. He went back on chemo. Buck enjoyed the summer, he had rehabed a shore house we had purchased the winter before being diagnosed and got to spend most of the summer there. In October he basically went into liver failure, his bilirubin was 19, he was sooo orange, some mental changes also.  Drains were placed in the liver to bring down the bilirubin but then he started taking on water like the Titanic and that was when he put up the white flag. He would get his abdomen drained weekly but... In November he was in distributive shock, we went to our community hospital (had been getting treatment in the city). Very good experience at the community hospital, Buck went onto hospice service. Our daughter was to be married this December, she got married in his hospital room, it was his last fully conscious day. Buck's passing was so peaceful. He had the chance to have a heart to heart with all our children (all grown).  Buck used these past two years to their full advantage.  He tolerated chemo so well, yes there were down days but as long as he knew they would be followed by good days, he was okay with that.  He saw this disease as a blessing, said it got rid of the noise in his life, blessed that it happened when our kids were grown (3 had gotten married in these 2 years). He truely appreciated every day. Sorry for rambling. What I really wonder is if we had not done the clinical trial would things be different.  In my mind I associate the trial with the liver abscess. The liver was doing fine before the trial.  We entered the trial to address the lung mets which were not responding to the chemo. I don't know.  Not worth questioning.  We had great care at Penn, really have no regrets. Was just hoping for more time. In the end, his passing was so peaceful, he was ready.

Sorry

So very sorry to hear.  It's so hard for finding a cure, and when you think you have one, the treatment just doesn't work. I'm thankful you had great care and he spent his last days with you and no complications.  Wishing and praying you much peace during this most difficult time.

Kim

Kazenmax

Slow-runner said:

Liver damage not the lung mets that proved fatal

My husband just passed on November 27.  He was diagnosed in August 2017. He had a tumor in the ascending colon with liver, lung, peritoneal and lymph node involvment. His only symptom was shortness of breath when running and a small pain in his side. Lung mets were small, but did grow but never enough to alarm the doctor. Buck's initial CEA was 1200, the lowest we ever got was 115. Buck had all the therapies, folfox, folfiri, oral meds, chemoembolization to the liver (pretty successful), was on a clinical trial for immunotherapy.  Buck developed an intestinal blockage, more like a shutdown, in the Spring of 2019, also a liver abscess. At this time our doc told us we were out of options, suggestioned hospice.  Buck was not ready. I prayed so hard for one more summer;  he got it.  His bowel function returned after a gtube, abscess drain and TPN. He went back on chemo. Buck enjoyed the summer, he had rehabed a shore house we had purchased the winter before being diagnosed and got to spend most of the summer there. In October he basically went into liver failure, his bilirubin was 19, he was sooo orange, some mental changes also.  Drains were placed in the liver to bring down the bilirubin but then he started taking on water like the Titanic and that was when he put up the white flag. He would get his abdomen drained weekly but... In November he was in distributive shock, we went to our community hospital (had been getting treatment in the city). Very good experience at the community hospital, Buck went onto hospice service. Our daughter was to be married this December, she got married in his hospital room, it was his last fully conscious day. Buck's passing was so peaceful. He had the chance to have a heart to heart with all our children (all grown).  Buck used these past two years to their full advantage.  He tolerated chemo so well, yes there were down days but as long as he knew they would be followed by good days, he was okay with that.  He saw this disease as a blessing, said it got rid of the noise in his life, blessed that it happened when our kids were grown (3 had gotten married in these 2 years). He truely appreciated every day. Sorry for rambling. What I really wonder is if we had not done the clinical trial would things be different.  In my mind I associate the trial with the liver abscess. The liver was doing fine before the trial.  We entered the trial to address the lung mets which were not responding to the chemo. I don't know.  Not worth questioning.  We had great care at Penn, really have no regrets. Was just hoping for more time. In the end, his passing was so peaceful, he was ready.

I can’t imagine how painful

I can’t imagine how painful this has been for you and your family but thank you so much for sharing this information. Sending you love and peace.

k

NewHere

PhillieG said:

An Unanswerable Question

Hi M, it's a tough call that many of us may have to make. What makes it even tougher is that no one can give you an accurate answer since we all react differently to treatment as well as all of us having a different level of tolerance. Chemo is certainly not easy to take at times

You listed, "chemo causes liver damage" as a reason you're not in favor of doing chemo. I did a little investigating and the overall consensus is that sometimes it does, sometimes it doesn't. I'm posting this for all that are following this thread that it's not a given it will cause damage, nor is it a given that it won't cause damage.

I wish you good health and peace of mind in the coming year and I support whatever decision you make for your life.
Best
-phil

The Side Effects (Phil's Point)

The warning labels on these drugs are scary as heck.  I have been fortunate in that the benefits of the drugs I have taken outweigh the risk and actual complications.  And some of these things are listed because everything has to be listed as a possible side effect, coupled with a lack of detail of who had the side effects.  Much like the stats in general are skewed in survival rate (no real breakdown of age, overall health and other things) there are some other details in effects which may affect things.

For instance, I am not sure how many people have anecodately mentioned no neuropathy as compared to neuropathy, but it seems everyone gets that one to some degree or the other based on posts I have seen. The same may (or may) not be in play with regard to liver damage and other things.  I would be a bit hesitant to take anedecdotal "data" over research, but even some research is suspect.

The two drugs that are proposed for me now that the first and second line treatments are off the table look nasty.  And my oncologist was not pushing for me to go on either.  She has been very good in addressing quality of life in all of this.  And I am not sure I will definately jump into the new ones based on expected life expectency vs benefit.  My FOLFORI routine usually works about a year, though people will have different outcomes.  My ocnologist was clear about that, and did everything to delay it as long as possible.  

I would go back on it if I could at this point.  BUT I did have a bad 14 days where I was really sick three times.  They still do not know if that was from the start of the chemo or radiation for the spine or anything.  I could easily have stopped treatment then.  And I told my wife if this is what is was going to be, I was not doing it anymore.  It would be unbearable.  

Eveyone has to balance all these things and make a decision that works for them.  My ticket pretty much just got punched, so looking at chemo that I have had gone through and tolerated I do wish I can go back on.  The drugs in the trial scare the h--l out of me to some degree, but in the context of the trial and what is hoped for, could be worth the risk.  I do not have to make a decision yet.  The next lines scare the h--l out of me even more.  And I am not sure I will do them as I looked into the studies a bit more.  I now understand the reservaiton my doctor had and sort of kicking that can down the road.

 

Trubrit

Slow-runner said:

Liver damage not the lung mets that proved fatal

My husband just passed on November 27.  He was diagnosed in August 2017. He had a tumor in the ascending colon with liver, lung, peritoneal and lymph node involvment. His only symptom was shortness of breath when running and a small pain in his side. Lung mets were small, but did grow but never enough to alarm the doctor. Buck's initial CEA was 1200, the lowest we ever got was 115. Buck had all the therapies, folfox, folfiri, oral meds, chemoembolization to the liver (pretty successful), was on a clinical trial for immunotherapy.  Buck developed an intestinal blockage, more like a shutdown, in the Spring of 2019, also a liver abscess. At this time our doc told us we were out of options, suggestioned hospice.  Buck was not ready. I prayed so hard for one more summer;  he got it.  His bowel function returned after a gtube, abscess drain and TPN. He went back on chemo. Buck enjoyed the summer, he had rehabed a shore house we had purchased the winter before being diagnosed and got to spend most of the summer there. In October he basically went into liver failure, his bilirubin was 19, he was sooo orange, some mental changes also.  Drains were placed in the liver to bring down the bilirubin but then he started taking on water like the Titanic and that was when he put up the white flag. He would get his abdomen drained weekly but... In November he was in distributive shock, we went to our community hospital (had been getting treatment in the city). Very good experience at the community hospital, Buck went onto hospice service. Our daughter was to be married this December, she got married in his hospital room, it was his last fully conscious day. Buck's passing was so peaceful. He had the chance to have a heart to heart with all our children (all grown).  Buck used these past two years to their full advantage.  He tolerated chemo so well, yes there were down days but as long as he knew they would be followed by good days, he was okay with that.  He saw this disease as a blessing, said it got rid of the noise in his life, blessed that it happened when our kids were grown (3 had gotten married in these 2 years). He truely appreciated every day. Sorry for rambling. What I really wonder is if we had not done the clinical trial would things be different.  In my mind I associate the trial with the liver abscess. The liver was doing fine before the trial.  We entered the trial to address the lung mets which were not responding to the chemo. I don't know.  Not worth questioning.  We had great care at Penn, really have no regrets. Was just hoping for more time. In the end, his passing was so peaceful, he was ready.

I am so very sorry to read that Buck has passed - UPDATE

Slow-runner, would you like to share this post on a new thread? I know that your forum family will want to share their hearfelt sympathy with your at this time.  

And please, there is no need for any apology. You are not rambling at all. And lastly, do not play the what-if game because there is no answer.  You will chase you tail and get nowhere. 

I hope you find peace as time passes, and find joy in your family and those who love you. 

UPDATE:  Slow-runner, I am going to copy and paste your post to a new thread, so that we can respond with our love and thoughts.  I hope I haven't over-stepped. If I have, please PM me, and I will make emends.

Tru

mojogirl67

PhillieG said:

An Unanswerable Question

Hi M, it's a tough call that many of us may have to make. What makes it even tougher is that no one can give you an accurate answer since we all react differently to treatment as well as all of us having a different level of tolerance. Chemo is certainly not easy to take at times

You listed, "chemo causes liver damage" as a reason you're not in favor of doing chemo. I did a little investigating and the overall consensus is that sometimes it does, sometimes it doesn't. I'm posting this for all that are following this thread that it's not a given it will cause damage, nor is it a given that it won't cause damage.

I wish you good health and peace of mind in the coming year and I support whatever decision you make for your life.
Best
-phil

I Did A Whole Lot Of Investigating

I will again post that chemo DOES cause liver damage. All I can suggest to others here is to be your own advocate and don't just read ONE study someone throws your way. Educate yourself as much as possible. This board and many more are wonderful places to learn and share. Still, we are all human and affected by emotion and our individual experiences. Keep that in thought thru all of it.  Chemos are toxins and yes, they do kill cancer cells. BUT, they also kill much more. For me, I have had an entire lobe of my liver removed, part of my colon resected and my gallbladder removed. MY system is extremely compromised to filter anything as it once did so pouring more toxic chemicals into it in hopes of killing what was never addressed in the first place may buy me more time ,but it is not the "quality" of time that I desire. I will take two months of good time verses 6 months of nausea, diarrhea, endless injections/medications and running from doctor to doctor to be scanned and debated upon oh how to tackle what still remains...Stage IV METASTATIC CANCER in my body that NO ONE has a cure for.  I am nobody's judge or jury on how to approach and deal with the cancer they face. I just happen to have had more experience than I ever bargained for with being a caregiver for over a year to a husband and then being the patient in the driver's seat. When my husband got sick, we chased everything to cure him. I have never seen a human being turn the shade of yellow that he did. His liver was bombarded and never recovered. I could only stand by when a last resort of a feeding tube was suggested to him and he took it. He started his fight at 220lbs on a 6'4 frame and when he died he was 140lbs. I so wish we had spent more time in quality than we did in fear and fight. That is a choice that each must make with this horrible disease. 

SnapDragon2

mojogirl67 said:

I Did A Whole Lot Of Investigating

I will again post that chemo DOES cause liver damage. All I can suggest to others here is to be your own advocate and don't just read ONE study someone throws your way. Educate yourself as much as possible. This board and many more are wonderful places to learn and share. Still, we are all human and affected by emotion and our individual experiences. Keep that in thought thru all of it.  Chemos are toxins and yes, they do kill cancer cells. BUT, they also kill much more. For me, I have had an entire lobe of my liver removed, part of my colon resected and my gallbladder removed. MY system is extremely compromised to filter anything as it once did so pouring more toxic chemicals into it in hopes of killing what was never addressed in the first place may buy me more time ,but it is not the "quality" of time that I desire. I will take two months of good time verses 6 months of nausea, diarrhea, endless injections/medications and running from doctor to doctor to be scanned and debated upon oh how to tackle what still remains...Stage IV METASTATIC CANCER in my body that NO ONE has a cure for.  I am nobody's judge or jury on how to approach and deal with the cancer they face. I just happen to have had more experience than I ever bargained for with being a caregiver for over a year to a husband and then being the patient in the driver's seat. When my husband got sick, we chased everything to cure him. I have never seen a human being turn the shade of yellow that he did. His liver was bombarded and never recovered. I could only stand by when a last resort of a feeding tube was suggested to him and he took it. He started his fight at 220lbs on a 6'4 frame and when he died he was 140lbs. I so wish we had spent more time in quality than we did in fear and fight. That is a choice that each must make with this horrible disease. 

I just want to come to NC and

I just want to come to NC and hug you !!!

PhillieG

An Unanswerable Question

Hi M, it's a tough call that many of us may have to make. What makes it even tougher is that no one can give you an accurate answer since we all react differently to treatment as well as all of us having a different level of tolerance. Chemo is certainly not easy to take at times

You listed, "chemo causes liver damage" as a reason you're not in favor of doing chemo. I did a little investigating and the overall consensus is that sometimes it does, sometimes it doesn't. I'm posting this for all that are following this thread that it's not a given it will cause damage, nor is it a given that it won't cause damage.

I wish you good health and peace of mind in the coming year and I support whatever decision you make for your life.
Best
-phil

mojogirl67

SnapDragon2 said:

I just want to come to NC and

I just want to come to NC and hug you !!!

All Hugs Apply Here

Thank you for being so sweet when you are fighting your own battles. I wish you hope, strenth, love, and joy in abundance thru all of the choices you face ,as well as thru all of your days regardless of this disease that brought us here. Hoping you had a beautiful Christmas and wishing you a wonderful New Year to follow!! Hugs, M