All knowing board. Chemo question.

razpsu

Heisman
Jan 13, 2004
13,965
13,965
113
So I had lung surgery where they took a large mass and my top right lung out and found that I had cancer in some lymph nodes as well.
atypical carcinoid. That is in between small cell and typical carcinoid.
So may have to start chemo soon.
I am sure that some of you have gone through this. Just wanted to see what your experience was and what I should expect. Thanks for your help!!
 
Jan 8, 2016
186
250
63
So I had lung surgery where they took a large mass and my top right lung out and found that I had cancer in some lymph nodes as well.
atypical carcinoid. That is in between small cell and typical carcinoid.
So may have to start chemo soon.
I am sure that some of you have gone through this. Just wanted to see what your experience was and what I should expect. Thanks for your help!!
Sorry to hear that raz. I can’t help with info for the chemo. I hope everything goes well for you to get back to whatever you love to do in life. Medicine keeps advancing every single day. Keep a positive mindset. This is just a bump in the road. My dad had part of his lung taken out when he was 54 and he was around for many many years after
 

Midnighter

Heisman
Jan 22, 2021
11,839
19,582
113
So I had lung surgery where they took a large mass and my top right lung out and found that I had cancer in some lymph nodes as well.
atypical carcinoid. That is in between small cell and typical carcinoid.
So may have to start chemo soon.
I am sure that some of you have gone through this. Just wanted to see what your experience was and what I should expect. Thanks for your help!!

Hang in there pal. Someone will certainly come through with the info you are looking for; this board is an amazing place.
 

ApexLion

Heisman
Nov 1, 2021
5,864
10,036
113
I’m sorry @razpsu . I know you are tough having lived thru multiple hurricanes in Myrtle. Our daughter went thru chemo and one of the odd things I learned was that Zyrtec of all things really works well to reduce bone pain. My daughter was ok with other symptoms other than bone pain. Nausea was fine, tiredness was manageable. But bone pain interrupted her sleep. However, Zyrtec helped a great deal. We also did a lot of stretching and used a roller on her legs once the pain kicked in. You got this.
 

PSU87

All-Conference
Jun 8, 2001
2,042
4,351
113
So I had lung surgery where they took a large mass and my top right lung out and found that I had cancer in some lymph nodes as well.
atypical carcinoid. That is in between small cell and typical carcinoid.
So may have to start chemo soon.
I am sure that some of you have gone through this. Just wanted to see what your experience was and what I should expect. Thanks for your help!!
Prayers are with you.

Chemo specific, I have no recommendations, but from family members with cancer and having been extensively involved in the radiation treatment side I will give you one heartfelt piece of advice....

No matter how much you trust your local hospital, please, please get seen by one of the "big boys"...Sloane Kettering, Moffit, Mayo, MD Anderson, etc. Your treatment can still be local, but get the best of the best reviewing your case.

Stout hearts.....we are with you
 

pendal1

Senior
Apr 24, 2003
6,569
714
113
So I had lung surgery where they took a large mass and my top right lung out and found that I had cancer in some lymph nodes as well.
atypical carcinoid. That is in between small cell and typical carcinoid.
So may have to start chemo soon.
I am sure that some of you have gone through this. Just wanted to see what your experience was and what I should expect. Thanks for your help!!
God bless Raz. I will keep you in my prayers. Stay strong.
 
  • Like
Reactions: razpsu

razpsu

Heisman
Jan 13, 2004
13,965
13,965
113
I’m sorry @razpsu . I know you are tough having lived thru multiple hurricanes in Myrtle. Our daughter went thru chemo and one of the odd things I learned was that Zyrtec of all things really works well to reduce bone pain. My daughter was ok with other symptoms other than bone pain. Nausea was fine, tiredness was manageable. But bone pain interrupted her sleep. However, Zyrtec helped a great deal. We also did a lot of stretching and used a roller on her legs once the pain kicked in. You got this.
Thanks. Why did she have bone pain.
 

razpsu

Heisman
Jan 13, 2004
13,965
13,965
113
Prayers are with you.

Chemo specific, I have no recommendations, but from family members with cancer and having been extensively involved in the radiation treatment side I will give you one heartfelt piece of advice....

No matter how much you trust your local hospital, please, please get seen by one of the "big boys"...Sloane Kettering, Moffit, Mayo, MD Anderson, etc. Your treatment can still be local, but get the best of the best reviewing your case.

Stout hearts.....we are with you
Amen to that. Had a misdiagnosis at McLeod in north Myrtle and went to musc in Charleston. They know there stuff.
 
  • Like
Reactions: PSU87

Tony 83

Senior
Nov 15, 2001
167
431
63
So I had lung surgery where they took a large mass and my top right lung out and found that I had cancer in some lymph nodes as well.
atypical carcinoid. That is in between small cell and typical carcinoid.
So may have to start chemo soon.
I am sure that some of you have gone through this. Just wanted to see what your experience was and what I should expect. Thanks for your help!!
My sincerest best wishes. You're a tough dude and will meet this head on.

I had a similar experience - hadn't had any reason to think anything was wrong but had put off a colonoscopy. The first one I had revealed a stage 3 (like you, in the regional lymph nodes) colon tumor that had to be surgically removed, followed by 6 months of chemo. That was in 2019, and to this day I'm still free of it.

Best to you.
 

northwoods

All-Conference
Jun 25, 2001
642
1,548
93
In early Fall of 2014 I was living just north of you in Little River, SC, and had surgery in Myrtle Beach for a nasty and deep melanoma that had developed on my chest very quickly while I was on vacation in Vermont. At the time my daughter was working at the Northwestern University Medical Center in Chicago. She knew how serious my situation would be if the cancer metathesized, and "saved my life" by getting me out of Myrtle Beach to a highly recommended cancer specialist at MUSC in Charleston. I visited monthly for tests, screenings, etc., and in late Spring of 2015 got a call from my oncologist there to come back immediately after some imaging just the previous day.

He showed me the film, and what I can only describe as looking like "radioactive small yellow/orange jelly beans" showed up quite noticeably in my thyroid gland, larynx, and right hip. He explained that my melanoma cancer had metathesized into my system, and that I now had Stage Four melanoma cancer. I knew this was bad news, but asked him "in layman's terms, how bad". I will never forget his answer as he had to kind of compose himself before he replied "essentially, it means that you have a 50% chance of living 30-90 more days". He then paused and added the welcome word I'll never forget --- BUT. "But, there is one doctor I rely on if I have a situation that I want to discuss or just a second opinion that would be of value (remember my oncologist at MUSC was already very highly recommended). He continued, " His name is Asim Amin, and he is at the Levine Cancer Institute in Charlotte, NC. They are doing some amazing things there developing new ways to treat cancer, especially deadly Stage Four melanoma cancer like you have".

Long story short, I was able to meet with Dr. Amin and enroll in a Clinical Trial involving what then was the new, experimental, Immune Therapy treatment for cancer which involves infusions that enable your own white cells to go after, and destroy, the cancer cells. It was effective, and very over the course of a couple years I experienced no new cancer and my cancer in all three areas became gradually necrotic and ultimately disappeared completely. I've been cancer free since 2017 or 2018 and am now 100% cured and in perfect health.

The takeaways for you that I'd like to pass along are several and all may or may not be applicable. I would take a good look at being treated at MUSC in Charleston vs. Myrtle Beach (I'd be dead if I hadn't listened to my daughter and switched doctors and hospitals). Be your own advocate --- read as much as you can about lung cancer and lung surgery and ask questions. Inquire about possible new, improved, approaches to treatments for your specific cancer and situation. Immune Therapy treatment works great on melanoma cancer and is now being used in other forms of cancer as well. I do not know if it is being used to effectively treat any forms of lung cancer. You will need a TEAM to share your ups and downs with you and offer their help and encouragement--- family, friends, and now your BWI family as well. Perhaps most important --- "attitude really is everything". Retain a positive attitude and focus on getting well and beating this disease --- don't even begin to think in any other terms.

My intent in telling my story isn't to "capture" your heartfelt post, but rather to let you know that it is amazing what is possible today in treating and beating cancer IF you have the right hospital and doctors, knowledge about your specific situation and cancer, an entire team offering encouragement and support, and the right attitude. You have just had an unexpected hurdle and a setback. You be damn sure to let Mr. Cancer know daily that he picked the wrong guy to mess with. I wish you the absolute best!
 
Last edited:

ScottL

All-Conference
Jul 11, 2021
2,245
3,402
113
So I had lung surgery where they took a large mass and my top right lung out and found that I had cancer in some lymph nodes as well.
atypical carcinoid. That is in between small cell and typical carcinoid.
So may have to start chemo soon.
I am sure that some of you have gone through this. Just wanted to see what your experience was and what I should expect. Thanks for your help!!
Sorry to hear that. I have no good advice, other than to stay positive, believe, and fight as hard as you can.
 

19333lion

Senior
Jan 30, 2016
318
543
93
Having the best oncology team is the first thing. Feel free to get a second opinion on your proposed treatment. I didn't see you mention radiation. IMO, that is worse than chemo. If you don't require it, that is a real plus. But what with cancer, you have to do what you have to do. You definitely have to soldier through. Keep your eyes on the goal. Best wishes for a complete recovery.
 
  • Like
Reactions: northwoods

WestSideLion

All-American
May 29, 2001
4,865
5,279
113
raz, I’m so sorry to hear about your health battle. My thoughts and prayers are with you.

I am a cancer survivor…now more than 8 years cancer-free. I had GI cancer and did a combination of FOLFOX and FOLFIRI. Both drugs are “corrosive” so I had a port installed in my chest and had 9-hour infusions every two weeks.

The start of chemo was rough for me. It was more fatigue than anything else. Doctors gave me good meds to manage nausea, etc. Zofran, Ativan, etc.

I did regular blood work prior to each chemo treatment to monitor cell counts, etc. I was more susceptible to getting sick and wound up neutropenic at one point. The doctor put me on Neulasta to boost white blood cell creation. That was every two weeks and caused some bone aches.

There’s also ongoing chemo port maintenance to know about. Even after chemo, I kept my port in for over a year just in case. I had to get it flushed every two weeks. I also had a rare side effect where I had thoracic outlet blood clots in my neck and shoulder. Doctors put me on Xarelto as a blood thinner. That required some care too.

Overall, chemo is about making and carefully managing health tradeoffs. Your immune system will be compromised so you need to take extra steps to manage that.

The advice above on finding the right oncologist and care team is spot on.

Good luck with your journey.
 
  • Like
Reactions: razpsu and ApexLion

olelion

Senior
Jun 10, 2001
2,655
811
113
So I had lung surgery where they took a large mass and my top right lung out and found that I had cancer in some lymph nodes as well.
atypical carcinoid. That is in between small cell and typical carcinoid.
So may have to start chemo soon.
I am sure that some of you have gone through this. Just wanted to see what your experience was and what I should expect. Thanks for your help!!
My wife is currently being treated for oligo-metastatic non small cell adeno carcinoma with EGFR mutation of the right lung. The other cancerous spot was the pelvic bone only. In lieu of surgery, radiation was performed on both the lung and the pelvic region, 5 treatments each followed by chemotherapy. That took care of it with very minimal side effects from the chemo (i.e. no hair loss, very very slight peripheral neuropathy). She is now about one month onto maintenance chemotherapy with Tigrasso, an oral chemo. Some issues with the Tigrasso are diarrhea and a skin rash. Skin rash was taken care of with a steroid and the diarrhea is diminishing. A follow up CTscan with contrast is scheduled for early April
 
  • Like
Reactions: razpsu

Nits74

All-Conference
May 14, 2010
1,215
1,935
113
raz, I’m so sorry to hear about your health battle. My thoughts and prayers are with you.

I am a cancer survivor…now more than 8 years cancer-free. I had GI cancer and did a combination of FOLFOX and FOLFIRI. Both drugs are “corrosive” so I had a port installed in my chest and had 9-hour infusions every two weeks.

The start of chemo was rough for me. It was more fatigue than anything else. Doctors gave me good meds to manage nausea, etc. Zofran, Ativan, etc.

I did regular blood work prior to each chemo treatment to monitor cell counts, etc. I was more susceptible to getting sick and wound up neutropenic at one point. The doctor put me on Neulasta to boost white blood cell creation. That was every two weeks and caused some bone aches.

There’s also ongoing chemo port maintenance to know about. Even after chemo, I kept my port in for over a year just in case. I had to get it flushed every two weeks. I also had a rare side effect where I had thoracic outlet blood clots in my neck and shoulder. Doctors put me on Xarelto as a blood thinner. That required some care too.

Overall, chemo is about making and carefully managing health tradeoffs. Your immune system will be compromised so you need to take extra steps to manage that.

The advice above on finding the right oncologist and care team is spot on.od luck with your journey.
WestSide, Very good and informative post you provided for Raz. Also demonstrative of your mental strength. Something that should be helpful to him.

And Raz, we'll all be thinking of you. Best of luck and keep us informed.
 
  • Like
Reactions: WestSideLion

razpsu

Heisman
Jan 13, 2004
13,965
13,965
113
Thank you for the comments so far.
Just got off the phone with oncologist. Said that chemo may or may not work on atypical cancer. But if we ware going to do it we have to do it now after surgery and can’t put it off.. There are no studies that it could work but since cancer is microscopic in my body, if I have it, then it is easier to eradicate than if it goes to a mass. Carcinoid overall is very slow growing and atypical grows a little faster. So…. I have to get with thoracic surgeon then and see what he thinks for my heart surgery and when that can now happen. Have widowmaker at the min stage of surgery and that is going to be full valve and replacement.
So….. tons of fun. In 2026 turning 60 in June.
 

Midnighter

Heisman
Jan 22, 2021
11,839
19,582
113
Thank you for the comments so far.
Just got off the phone with oncologist. Said that chemo may or may not work on atypical cancer. But if we ware going to do it we have to do it now after surgery and can’t put it off.. There are no studies that it could work but since cancer is microscopic in my body, if I have it, then it is easier to eradicate than if it goes to a mass. Carcinoid overall is very slow growing and atypical grows a little faster. So…. I have to get with thoracic surgeon then and see what he thinks for my heart surgery and when that can now happen. Have widowmaker at the min stage of surgery and that is going to be full valve and replacement.
So….. tons of fun. In 2026 turning 60 in June.

We’re here for you pal. You. Got. This.

Schitts Creek Help GIF by CBC
 

WestSideLion

All-American
May 29, 2001
4,865
5,279
113
Thank you for the comments so far.
Just got off the phone with oncologist. Said that chemo may or may not work on atypical cancer. But if we ware going to do it we have to do it now after surgery and can’t put it off.. There are no studies that it could work but since cancer is microscopic in my body, if I have it, then it is easier to eradicate than if it goes to a mass. Carcinoid overall is very slow growing and atypical grows a little faster. So…. I have to get with thoracic surgeon then and see what he thinks for my heart surgery and when that can now happen. Have widowmaker at the min stage of surgery and that is going to be full valve and replacement.
So….. tons of fun. In 2026 turning 60 in June.
raz, hopefully your oncologist goes through this with you, but try to get to the dentist before starting chemo. Even routine cavities can be a problem once treatment begins.

There are a host of seemingly normal things that require more thought when in treatment.
 
  • Like
Reactions: PSJimbo