Advice for newly diagnosed mCRC-liver, possibly bone.
My husband and I are just starting our journey with CRC. He was diagnosed this last weekend following a trip to the ER following severe nausea, vomiting and fatigue. The diagnosis was not reached immediately because of a positive HPylori test. After doing the two miserable weeks of antibiotics for HPylori, the symptoms of nausea, vomiting, fatigue and bloating continued. A CT scan in the ER revealed a large colonic mass with liver involvement. After being in shock for the last three days, we have both decided to maintain normalcy and positivity in our home. He is committed to fighting with everything he has!
As an RN, I've of course been driving myself nuts trying to research what's available and was grateful to have found this discussion forum. It has been very uplifting to read through others' journeys and to absorb so much positive energy.
His colonoscopy is this Thursday to perform the biopsy, get the cancer staged correctly and we will go from there. On Friday, he will have a total body bone scan. My hope with this posting, is that I can gain advice from others on things to address with the oncologist. Any suggestions that others have to offer will fall on open ears and a willing mind. Thank you so much for being here!
Comments
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Welcome
Welcome to a message board nobody really wants to join, however, we are happy that you found us. Now will be a whirlwind of tests, doctors, appointments, etc. to help your husband get better. It is best if he has someone with him for appointments as sometimes things are missed or may not be heard correctly. Taking notes is extremely helpful and also when you are at home, if you have some questions, jot them down and bring the notes with you. You might think I'll remember this and that question, but chances are you will forget most. Once there is a direction for your husband to follow, it is highly recommended (but not always) that you seek a second opinion. If you feel very comfortable with your doctor, even getting a second opinion should be acceptable with them. You have found a great group of people who are here to help you and your husband. Hoping that the colonoscopy goes well on Thursday and don't hesitate to ask any questions you may have as we have covered almost everything.
Kim
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So Sorry To Hear...
So sorry to hear about your husbands recent trauma's and dx of cancer. By the time I was dx'd, the cancer was pretty advanced - although it hadn't yet metastized (that could be seen on any scans anyway...). I spent many hours on the internet - google is now my favorite friend. :-) There is also a lot of really good information on this site, as well, along with many people willing to share their experiences that may be similar to yours. My advice is to stay positive and take one day at a time. Everyone is different - no 2 cases are alike. The medical field is doing remarkable things with cancer treatment these days.
I'll keep you in my prayers.
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Adding my welcome to you and your husband........
You have found a group of very caring and supportive people, with a wealth of knowledge and vast experiences. It is an overwhelming time for both of you....try and take one step at a time and as Kim suggested a notebook is a great idea.
Please use this forum for any questions, thoughts, feelings, and as a sounding block for whatever you may come across. Thinking of you both....~Ann
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to me...
..at this point are two drugs you should know about.
Two wonder drugs proposed for advanced CRC surgeries are cimetidine and celebrex. Our surgeons have always used celebrex without prompting. They replaced morphine with tramadol upon request. Cimetidine for prevention of immunosuppression and more mets is much less familiar to them. Three years ago I couldn't find one doctor that knew anything about cimetidine for CRC, from their own journals, so we had to hump it ourselves.
Cimetidine taken before, during and/or after colon surgery is however a truly golden opportunity for most patients that gets missed - no advertising or sales reps, literally many doctors know nothing about it. The few stats that are available, are huge. The doctors often turn up their noses without big names and glossies, but they literally have no other drug with cimetidine's capability for surgery. Beause of its previous use for prevention of acid aspiration for 20+ years, it is already well proven and approved for surgery. For most advanced colon cancer it appears to be a crucial surgery drug that gets no respect over "more modern" proton pump inhibitors, and that costs many CRC patients dearly.
We do a lot of extra things but we take a walk on doctors that can't support cimetidine. Life is too important. My wife has already doubled her prognosis over "standard" in great shape despite bad biomarkers and plenty of initial spread, and one of the most important credits we have is for perioperative cimetidine.
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Also most advanced CRC patients are highly deficient on vitamin D, where even 10,000 iu per day may still be short. You might read these Life Extension articles, these two are for surgery, the other longer term followup.
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We have asked for more intensive blood tests before surgery and beyond standard, these included CA19-9, CA72-4, LDH, GGTP, ESR, hsCRP and vitamin D.
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Warm WelcomeAnnLouise said:Adding my welcome to you and your husband........
You have found a group of very caring and supportive people, with a wealth of knowledge and vast experiences. It is an overwhelming time for both of you....try and take one step at a time and as Kim suggested a notebook is a great idea.
Please use this forum for any questions, thoughts, feelings, and as a sounding block for whatever you may come across. Thinking of you both....~Ann
a very warm welcome to both you and your husband. This is a wonderfully supportive forum so I am glad you have found us. The next few whiles will probably be the most frightening, confusing upsetting days that you will ever experience. The beginning is as Ann says totally overwhelming. So .....glad to see that you already have a plan for going forward.....get your staging. meet with your onc and establish your chemo/surgery/ plans.
Sometimes in the beginning it will seem as if things are moving too slowly....you will do a test and then have to wait and wait....you want to absorb everthing and do everything....but sometimes the wheels turn slowly so.......
breathe, ask us any questions you like.....and know that there are some of us here who have survived the colon cancer and liver involvement....I am stage IV and going strong since 2005......
best of luck this week.....stay in touch......maggie
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Welcome to board
Sorry to hear about the cancer dx on your husband. You two sound positive and willing to fight. He is lucky to have you as his caretaker. The caretaker is so vital in this cancer journey. Keep us updated soJew can hopefully give advise. Pray for you and your husband. Jeff
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First of all there is a lot
First of all there is a lot of hope here. Many long term stage IV survivors who are doin well.The best advice i can give this early in your journey is to educate yourself on the disease and treament options NOT the statistics. Write down a list of questions for the doctor and write down his answers. It acan be so overwhelming. Writing things down will help with that. I still do sometimes and i have been dealing with this for nearly 8 years.
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Bone scan???
Spread to the bone from CRC is found in only about 7% of those who DO have recurrences (so 7% of 50%). I'm surprised they'd be looking for this so early in his dx. I would think they'd be doing a PET scan instead which would show any tiny mets in other areas and help determine treatment options.
Actually, according to the CT scan, your husband is Stage IV already because of the liver involvement. The colonoscopy will be to determine location and look for other polyps. Surgery should be your first step in ridding his body of this cancer.
Here are two links with regard to the liver involvement. Both are 'good news' type articles.
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Thinking of you....
It is good to get the colonoscopy done so you can move on.....what makes them think that the bone is involved? I have stage IV colon cancer, diagnosed in Nov. 2011, with liver mets. I had surgery for colon first, then chemo, then liver resection. I am still in treatment but living life. So just remember there is life and living after diagnosis. It is uplifting to see that you both have a good, positive outlook and that and he is ready and willing to fight. We will be right beside you, for questions, sharing, venting, or whatever you may need. Keep us updated......~ Ann
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Nice Articles...PatchAdams said:Bone scan???
Spread to the bone from CRC is found in only about 7% of those who DO have recurrences (so 7% of 50%). I'm surprised they'd be looking for this so early in his dx. I would think they'd be doing a PET scan instead which would show any tiny mets in other areas and help determine treatment options.
Actually, according to the CT scan, your husband is Stage IV already because of the liver involvement. The colonoscopy will be to determine location and look for other polyps. Surgery should be your first step in ridding his body of this cancer.
Here are two links with regard to the liver involvement. Both are 'good news' type articles.
I got the chance to read the first link, Patch....
RFA always gets my attention, because originally I was set for an HR....but when they looked inside the plans changed...the surgeon determined had they attempted the resection (80%) that I would have expired in the arena - and so fortunately they switched over to RFA on the fly.
I had read in the literature that RFA was now considered equal to HR, during my consultation, especially if you didn't qualify to have one, like I discovered in O/R.
Of course, we've all been taught that HR is the gold standard and for those of us that can get those, that's a good thing. I found the statisitics regarding local recurrence within 5-years for tumors over 3cm very fascinating indeed. My tumor was 6cm x 8cm.....pretty big for a solitary tumorby any standards. So, according to the article the odds for follks like we were long - my surgeon and the liver crew all thought so too - they gave me less than a year at that time.
And I made it past the 5-year mark with no local recurrence - though it spread to the lungs twice after that....STILL, I beat the statistical odds of making it 5-years with no local liver recurrence, which still stands as a victory in my book.
The subsequent fights I would have to do have helped me reach me a remissive state for close to 22 mos now...longest time ever for me in the whole 9-years.
So, I'm a big proponent of RFA and believe that it played its role in extending me a few more miles down the road....if I were voting, I'd say I'd gotten just what the literature told me I would...."an equal if not greater success rate than a HR.
When I see the percentages of recurrence rates in the article of This vs That....I feel fortunate that I was able to beat those percentages for that 5-year period.....
I couldn't get a clear scan for sure this last time....though I had indicated "post-collateral" damage and fallout from treatment/surgeries in the liver area - and the rad and onc had concurred.....of course, even knowing what I think I know....and having the med team even agree, still doesn't give me complete assurance...... but we'll scan again in Sept....and I hope that the interpretation is worded much differently.
Anyway, nice articles and it gave me a reminder of what I had gone up against and beaten...lots of times we forget what we really accomplished as it becomes mired and clouded over time. It was nice to reflect back and ponder that particular crossroad....thx for post.
-Craig
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Bone Scan
Hi there
While it does seem unusual to call for a whole body scan at this point - I can't say it's just wrong not to do it - sounds like the onc is trying to run the elimination protocol.
I had a full body scan but it was about 3-4 years into my fight - and I had recurrence prior - and then recurred again....so the onc wanted to make sure and I was okay with it. The procedure itself is pretty simple. They will inject you with a radioactive material and have you wait approximately 2:30 hours for it to filter through your arteries and veins to give them a clearer picture.
They will take you into the scan room and position you....you would lay flat on your back and they will bring the scanner over you. It is pre-programmed and the scan could take between 45 minutes to an hour or so....all you have to do is lay there and be still....take a short nap even.
Films are processed and you go in for results...and go from there.
Your onc may be wanting to play it safe by testing as much as possible now to help determine the extent of the cancer. Doing or not doing the test is neither right nor wrong. One way to look at it, is that the test can be done - and you would know pretty definitively if there were bone activity.
As Patch stated, bone recurrence is a low percentage in us patients.... but it does happen.....the traditional path of cancer follows the colon/rectum - liver - lung - brain......though it can migrate to the bone. I've known three or four people with bone mets - though ususally in the sacral area - and that's a very difficult area to treat effectively.
Patient has the choice to do or not do the test...I can't see how it would hurt to do it....you take the risk of radiation exposure and the financial hit to the pocketbook, but at least you might be able to rule that area out - and that would be a good thing.
Whatever you decide will be the right thing to do for you guys - and if in doubt, you can always consider another opinion....take the scans to another practicioner and have them review them and give you their feedback.
Best of luck!
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thanks for being theremaglets said:Warm Welcome
a very warm welcome to both you and your husband. This is a wonderfully supportive forum so I am glad you have found us. The next few whiles will probably be the most frightening, confusing upsetting days that you will ever experience. The beginning is as Ann says totally overwhelming. So .....glad to see that you already have a plan for going forward.....get your staging. meet with your onc and establish your chemo/surgery/ plans.
Sometimes in the beginning it will seem as if things are moving too slowly....you will do a test and then have to wait and wait....you want to absorb everthing and do everything....but sometimes the wheels turn slowly so.......
breathe, ask us any questions you like.....and know that there are some of us here who have survived the colon cancer and liver involvement....I am stage IV and going strong since 2005......
best of luck this week.....stay in touch......maggie
Dear Maggie,
I joined this network today, and have been browsing through other survivors' posts simply because it's the only place right now that gives me warmth. My mother had a complete colon resection a week ago. The doctor had to remove a part of her liver and a part of her abdominal wall. The tumor was big and had penetrated through the wall of her colon, and so it was his professional opinion that it may have infiltrated into neighboring organs. We do not have the exact staging yet, but we know that some lymph nodes are involved and that some cancerous cells were discovered in the part of the liver that was removed. We will learn the exact staging and about further treatment next week, when we finally have an appointment with an oncologist. It's such an incredible source of inspiration to know that people like you are there, going strong, willing to share your beautiful stories. So I just wanted to stay, thanks for being there dear Maggie!
UT
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thanks for being theremaglets said:Warm Welcome
a very warm welcome to both you and your husband. This is a wonderfully supportive forum so I am glad you have found us. The next few whiles will probably be the most frightening, confusing upsetting days that you will ever experience. The beginning is as Ann says totally overwhelming. So .....glad to see that you already have a plan for going forward.....get your staging. meet with your onc and establish your chemo/surgery/ plans.
Sometimes in the beginning it will seem as if things are moving too slowly....you will do a test and then have to wait and wait....you want to absorb everthing and do everything....but sometimes the wheels turn slowly so.......
breathe, ask us any questions you like.....and know that there are some of us here who have survived the colon cancer and liver involvement....I am stage IV and going strong since 2005......
best of luck this week.....stay in touch......maggie
Dear Maggie,
I joined this network today, and have been browsing through other survivors' posts simply because it's the only place right now that gives me warmth. My mother had a complete colon resection a week ago. The doctor had to remove a part of her liver and a part of her abdominal wall. The tumor was big and had penetrated through the wall of her colon, and so it was his professional opinion that it may have infiltrated into neighboring organs. We do not have the exact staging yet, but we know that some lymph nodes are involved and that some cancerous cells were discovered in the part of the liver that was removed. We will learn the exact staging and about further treatment next week, when we finally have an appointment with an oncologist. It's such an incredible source of inspiration to know that people like you are there, going strong, willing to share your beautiful stories. So I just wanted to stay, thanks for being there dear Maggie!
UT
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CraigSundanceh said:Bone Scan
Hi there
While it does seem unusual to call for a whole body scan at this point - I can't say it's just wrong not to do it - sounds like the onc is trying to run the elimination protocol.
I had a full body scan but it was about 3-4 years into my fight - and I had recurrence prior - and then recurred again....so the onc wanted to make sure and I was okay with it. The procedure itself is pretty simple. They will inject you with a radioactive material and have you wait approximately 2:30 hours for it to filter through your arteries and veins to give them a clearer picture.
They will take you into the scan room and position you....you would lay flat on your back and they will bring the scanner over you. It is pre-programmed and the scan could take between 45 minutes to an hour or so....all you have to do is lay there and be still....take a short nap even.
Films are processed and you go in for results...and go from there.
Your onc may be wanting to play it safe by testing as much as possible now to help determine the extent of the cancer. Doing or not doing the test is neither right nor wrong. One way to look at it, is that the test can be done - and you would know pretty definitively if there were bone activity.
As Patch stated, bone recurrence is a low percentage in us patients.... but it does happen.....the traditional path of cancer follows the colon/rectum - liver - lung - brain......though it can migrate to the bone. I've known three or four people with bone mets - though ususally in the sacral area - and that's a very difficult area to treat effectively.
Patient has the choice to do or not do the test...I can't see how it would hurt to do it....you take the risk of radiation exposure and the financial hit to the pocketbook, but at least you might be able to rule that area out - and that would be a good thing.
Whatever you decide will be the right thing to do for you guys - and if in doubt, you can always consider another opinion....take the scans to another practicioner and have them review them and give you their feedback.
Best of luck!
She said total body bone scan which I read differently from a full body PET scan. Are they one and the same?
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They Are Different....PatchAdams said:Craig
She said total body bone scan which I read differently from a full body PET scan. Are they one and the same?
Different machines....and different protocols......
The bone scan prep took much longer than a PET......from 45 minutes to 2.5 hours.....apparently, it takes that long for the tracer to circulate throughout your entire body.
Scan from PET is generally 20-30 min based on patient weight.....bone scan took an hour for me....and the scanner moves all different directions and covers the entire body in that manner.
Scanners must be different....apparently, bone scanners are designed to look at bone in a way that the PETS don't or can't.....I really can't tell you that much more....that's all I know:)
I just did it once:)
But, those were the differences...
See ya, Patch:)
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Just wanted to say welcome!
I know no one wants to be a member of this club, but if you have to go through this, it's good to have folks who have walked the path ahead of you available for a little guidance and understanding. Whatever you and your DH go through, there will almost certainly be someone here who has also experinced it, and people are always hapy to answer questions. I would 2nd tans' comment about cimetidine, btw...I have had several recurrences, and surgeries, and used cimetidine for a 2 week period for the final surgery. It may be coincidental, but that happens to be the one that got me to NED (for the time being at least-16 months). It certainly can't hurt to try it if/when the time comes for surgery.
Sending big hugs and strength to you both~Ann Alexandria
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