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Advice Appreciated, Looking for similar cases

mknichols1
Posts: 2
Joined: Jan 2018

Hi all,

I am new to this forum and looking for some guidance.

I am 28 years old. I was diagnosed with stage IV colon cancer last year stemming from the genetic condition known as FAP (familial adenomatous polyposis). I've had a total colectomy and a partial resection of my right lung. I have completed one cycle of the standard FOLFOX treatment.

My post treatment scan results showed five 3-7mm lesions/nodules on my right and left lungs. They were too small for the radiologist to definitively classify as metasteses of the cancer, however my CEA count has gone from a 1 to a 1.4 since finishing chemotherapy. I have no other mets aside from the one removed with the lung resection.

My oncologist did not seem hopeful when reviewing my scan with me and suggested getting a second opinion at a research hospital (I was already thinking along these lines as well). I have an appointment with a specialist at Emory next Friday, and am cautiously optimistic that they will have a better outlook on my prognosis.

I know internet research can sometimes create a sense of fear or be overwhelming, but I am having trouble finding information on cases similar to mine. I know colorectal cancer mets tend to be primarily in the liver, but mine are specifically confined to my lungs. For lack of better phrasing, is that better or worse? He also mentioned that surgery was not an option since there are multiple spots--does that rule out ablation therapy? I just feel lost and want to know if I can still kick this crap. Any information appreciated.

JanJan63's picture
JanJan63
Posts: 2482
Joined: Sep 2014

Welcome to the forum. You're so young to be at that stage, wow. 

I have mets in one lung and have not had anything show up in my liver. It usually goes to the liver first but the lung first isn't rare. I don't know if that's better or worse. If chemo is going to treat mets it'll treat them no matter where they are. You must have more treatment options than just the Folfox, which is a crappy, unpleasant chemo to be on with some side affects that make it unusable for some people. 

Ablation should be an option but I'm not familiar with it. In Canada it isn't generally used for lung mets is what I was told. I assume you're in the States so it should be an option for you. I did have my mets radiated initially and it stopped them growing for almost a year.

A CEA of 1.4 is quite low and still within normal range of someone who is cancer free. CEA is not always a good indicator for some people. When I still had my tumour I was never above 2, now that I have lung mets it has gone as high as over 100. The chemo I was on brought it down to 7.5. I was on an immunotherapy chemo. I'm told they're the chemo of the future and are much easier to tolerate.

The internet in general is probably best avoided. Much of the information is old and out of date and doesn't take into account an individual's physiology or what it's really like to live with cancer. Even your oncologist can only go by numbers but has no first hand experience. This frum is a really good place for that.

Jan

mknichols1
Posts: 2
Joined: Jan 2018

Thank you Jan! Yes, my CEA levels at their highest were 8.9, which was after my colectomy but before my lung resection. My oncologist did not mention radiation, but I assumed that was a good thing? 

FOLFOX was awful. Took me right at six months to finish 12 rounds and I skipped the oxaliplatin for two of them because my side effects were so severe.

How long have you been living with your diagnosis? I’m so grateful to have found a place like this where I can talk to other people with similar situations.

JanJan63's picture
JanJan63
Posts: 2482
Joined: Sep 2014

I was diagnosed on Dec 31, 2013. Not sure why he didn't wait and give me my results a few days after the new year. So I was four years as of a couple of weeks ago. I didn't have the mets until two years ago, so I was initially a stage three. There are certainly chemos that aren't as nasty as Folfox. I couldn't complete my regimen and cannot take it again. 

Different people have different experiences with radiation. I found it to be easy but I now have issues with adhesions (internal scarring) that are attaching themselves to things in my abdomen. Some people can barely tolerate the radiation. The only way to know if you're a candidate would be to be referred to a radiation oncologist and he would decide. 

Is your doctor an oncologist experienced with colorectal cancer? Something about your post and what you've described makes me wonder how good he/she is.

Jan

Keisler69
Posts: 18
Joined: May 2017

You had immunotherapy for Colon Cancer? We were told that Immunotherapy isn’t offered for Colon Cancer yet... 

And the can do ablasions for cancerous lung nodules??? 

Mikenh's picture
Mikenh
Posts: 777
Joined: Oct 2017

Keytruda and Opdivo were approaved by the FDA and they can work with people with specific genetic conditions. They are not applicable to the vast majority of colorectal cancer patients.

Tumor-Invading-Lymphocytes started clinical trials in 2016 and they are a targeted therapy that uses the white blood cells but they only work for certain genetic mutations right now. There's a lot of this in the pipeline but it may take quite some time before it becomes routine therapy. The promise is no surgery, no radiation and no conventional chemo.

JanJan63's picture
JanJan63
Posts: 2482
Joined: Sep 2014

The chemo I've been on and will be again is Vectibix or Panitumumab. It's an immunotherapy chemo. But they tested my tumour first to see if it responded to it, which it did.

Jan

airborne72's picture
airborne72
Posts: 276
Joined: Sep 2012

I so hate your condition, but I am thoroughly impressed with your attitude!  Believe it or not, considering all of the treatment regimens and the wonders of modern medicine, the greatest physical advantage you have is youth.  The greatest mental advantage you have is a "can do" attitude.  Combined, these will better enable you to kick the crap out of cancer.

Jim

plsletitrain
Posts: 253
Joined: Jul 2017

I'm not so sure  but my understanding is that it depends on the location of the primary tumor.  It will spread on where its nearest, and liver and lungs are the nearest to the colon and rectum.  I can't give you any scientific advice but I'd defer to your doctors as they know better and they know how to deal with your tumors.  I have a suspicious lung nodule and I won't be calling it a met because I'm stubborn, I'd want to believe it will just go away.  But I was advised to undergo chemo again so that's what I'm doing.  You can probably merge the scientific and non-scientific ways to beat this.  You can research on the internet for additional knowledge but stay away from the negative statistics.  It won't help.

Mikenh's picture
Mikenh
Posts: 777
Joined: Oct 2017

Regarding CEA - it's different for every person. Mine was 1.4 before my first round of chemo and 1.7 before my second round. So your 1.4 after chemo beats my 1.7.

Yes, chemo is awful and it's the Oxalpilatin that is like responsible for most of your issues. I'm having quite a hard time with it myself.

I read a description of the genetic condition and it sounds very rough. I second going to a major cancer center as they have specialists and possibly treatments that could help and they have access to clinical trials.

KarenMG's picture
KarenMG
Posts: 109
Joined: Jun 2017

I'm so sorry to hear about your diagnosis at such an early age. I am 62 and am in the same boat as you except for the lung mets. Heck I feel 28 but the body does drag us down. I hope you are able to continue the folfox, I hear it is one of the best treatments for this. I could not take the oxalaplatin at all.

I wish I could give you more facts, I don't know any more right now to help you. I just pray that you will have the strength to fight this and keep going. I'm here for you, anytime you want to ask me anything or just chat, I'm here.

Take good care of yourself and as the old saying goes...one day at a time. That's all we can do I think and pray for healing.

God bless you!

Karen

CoachLou5
Posts: 3
Joined: Jan 2018

My husband (CoachLou5) just had his first round of FOLFOX with Avastin. I was wondering what trouble you had with the oxalaplatin so I know of things to be watching for him. He did not have any cold sensitivity this first time. Thank you. Charlene

ThomasH's picture
ThomasH
Posts: 100
Joined: Jun 2016

I did 12 rounds of FOLFOX and managed to make it through all of them with the OXY. I didn't have the bad cold sensitivity for the first couple treatments, but that can change pretty quickly. Your husband should be careful not to take any chances with temperature because once the sensitivity starts, it can flare pretty good. Room temperature water can feel like drinking a slurpy.

For me, I ran a fever every time I had a treatment. Usually the fever broke after a day, and to be honest, I think it helped the FOLFOX do a better job of killing off my cancer. Cancer doesn't do well with elevated temperatures, so I was OK with that. It was a little uncomfortable, but I got a lot of sleep. The chemo left me really tired, and even to this day I still get tired pretty quickly.

I still have some neuropathy in my finger tips, but not really enough to interfere with my day to day. My best advice for your husband is to stay positive. Sounds silly, but it can make a substancial difference in his response to treatment.

I wish him good luck and success in his road to recovery.

Thomas

JanJan63's picture
JanJan63
Posts: 2482
Joined: Sep 2014

Yes, the cold sensitivity doeasn't usually start until a few treatments into it. And then it progresses. I found it would go away a day or two before my next treatment. It was miserable. Just a handle of a door on a room or the tap would set it off. And it's sudden like a shock. They gave me gloves to use if I wanted something out of the fridge and they helped but those cheap knitted gloves you can get at Wal-Mart work just as well. I had a few pairs because if I wanted to make dinner and needed to cut vegetables I'd have to use the gloves. Eventually it got to the point where I could only drink things that were hot or I'd get the swallowing rocks or glass feeling. I didn't finish my full round of it.

Jan

Pamcakes
Posts: 87
Joined: Jan 2018

My dH is on cycle 11 of 12 of folfox, avastin and 5 fu pump at this time For stage 4.He has completed all so far with the full dose. The first few cycles were a breeze with a little tiredness and some pains when he ate or drank the first bite or drink. After cycle 3 he started getting the cold sensitivity, tingling and numbness in legs, feet and hands. increased fatigu, day 2 & 3 of the cycle nausea and no appetit at all. the last several treatments he doesn't get out of bed often and usually the day after the pump is removed he slowly gets up and moving again. The Avastin caused a blood clot, that was originally thought to be leg pain from the oxy. DH endured weeks of leg pain as the doctor said it was the oxy, so be careful we are blessed the blood clot did not cause any other issues. WBC went down very low twice, but this was during Christmas when we traveled a lot and had a lot of people in and out of the house. Had the booster shots and all was fine. We are 38 years old, so one of the hardest side effects for DH has been the emotional side of the cancer, but the chemo as well. At first this was really hard for me seeing him like that. I was a mess during these chemo weeks, but I didn't allow him to see it as I knew that would only make it harder for him. At some point it just clicked that I needed to take this time and work on me so that I would be a better caregiver to DH. The planning, obtaining info, surgeries all of those  side effects we were mostly prepared for, but no where near prepared  for the emotional and psychological side effects. But I agree, staying positive has been key for DH. He struggles a few days during treatment, but bounces back more positive and ready to keep on keeping on after. Hope all goes well for you and  your husband. This board has helped keep me sane, reading and learning. 

CoachLou5
Posts: 3
Joined: Jan 2018

thank you for the FOLFOX advice! I figured it would get harder as time goes on. You all have endured so much! My husband does have a great attitude and ready to fight for us and our 5 kids. He has hundreds of people praying for him and we know God will use our story, somehow, for His glory.   Charlene

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