Advice/Insight Please - Wife Just Diagnosed

[junderhill]

My wife (32 yrs old) was just diagnosed with colon cancer (details in sig). We were initially being herded towards surgery upon diagnosis but once they reviewed the CT, they changed course to chemo. The seem pretty concerned about the # of mets in the liver and took surgery off the table, indicating maybe it would be worth exploring later dependent upon how her cancer responds to chemo. She's slated to start chemo (FOLFOX) next Tuesday - 4 rounds, 2 weeks/rd. Any insight into similar experiences would be greatly appreciated, especially relating to effects of chemo, nutritional recommendations & ideas for how i can best care for my wife during this time. Thank you!

[WriterGirl1969]

My wife (32 yrs old) was just diagnosed with colon cancer (details in sig). We were initially being herded towards surgery upon diagnosis but once they reviewed the CT, they changed course to chemo. The seem pretty concerned about the # of mets in the liver and took surgery off the table, indicating maybe it would be worth exploring later dependent upon how her cancer responds to chemo. She's slated to start chemo (FOLFOX) next Tuesday - 4 rounds, 2 weeks/rd. Any insight into similar experiences would be greatly appreciated, especially relating to effects of chemo, nutritional recommendations & ideas for how i can best care for my wife during this time. Thank you!

So very sorry that you have had to find this site, and so very glad that you did. It is filled with amazing people who have been on this journey and will share so much information with you. I see that you are only 1 week out from diagnosis, which is a really rough time, so please let me just send you some virtual hugs, and send your wife some virtual hugs. As the one in my family with the cancer, I know how hard this was on my sweet hubby. Personally, I would much rather be the one going through it than to be the caregiver. So know that you can find lots of support here with regard to that. There are whole discussions for caregivers.

That said, the only real suggestion I would have is to make sure you are going to a MAJOR cancer treatment center, and hopefully one that is good with liver mets. I hear folks all over this site talk about Dr. Kemeny at Sloan Kettering in NYC for liver mets. Not sure where you are or where your wife is getting care, but do make sure she is dealing with and getting recommendations from a Board Certified Colo-Rectal surgeon (not just a general surgeon), and hopefully a tumor board who will discuss all aspects and then make decisions vs. just having 1 doctor making the calls. As someone who lives in a smaller rural area, I can tell you that if I end up with mets I am going to either Boston or NYC for care. Not because there aren't great doctors where I live, but they aren't on the cutting edge of care and there are SO many advancements in care just within the last couple of years. Dealing with stage IV and liver mets, you want to be sure you have the best care you can get. If you can't travel to a major center, consider contacting one and having medical records sent for review. They can then coordinate with local doctor(s) about treatment plans.

FOLFOX is one of the standard treatments, but not the one I took, so I won't speak to that, but know that everyone handles it differently. Also, while taking care of health is important, what's most important is doing what you need to in order to get through treatment and come out the other side. Keep an open mind, if possible, and try to take it one day at a time.

We're here if you need us. I'm sure you will get lots of great responses on your info.
Best of luck and keep us posted.

Hugs and Prayers,
Tracy

[karaj]

Hi junderhill,

I'm so sorry to read of your wife's diagnosis - this is a lousy club to be a part of but you can be a great comfort to her.

How is she feeling? Generally good health except for the whole having cancer thing? If so and because of her age, there's a reasonable chance that chemo won't throw her for too terrible a loop. I immediately experienced two of FOLFOX's most common side effects - neuropathy and cold sensitivity - but otherwise I was still able to work full time and live pretty well. It's hard but it's not impossible. Here are a few simple things that I relied on my husband and friends/family for:

- Everything involving cold. I don't think I even took anything out of the fridge. If you live in a cold region, she should always have gloves handy.

- Reminding me to stay hydrated, even when water tastes gross, it's really helpful.

- Reminding me to take my nausea meds. My first cycle I felt pretty fine so I didn't take the meds as prescribed; that was a terrible idea because I was really sick without warning.

- Cooking/finding/picking up food.

- Keep hanging out with friends, host dinners, etc. Some friends won't know how to handle themselves or what to even say to you or her. You can show them that it's okay to be normal.

- If your cancer center has a young adult program, check it out. I don't participate in group therapy but I do participate in their other projects and have met some great people and that has made a big difference.


Those are all pretty obvious but really helpful. I will say though that I know my husband did not sort through his own feelings or take the best care of himself throughout. She needs you to do that.

Also, if she hasn't been seen at a major cancer center then it can't hurt to get a second opinion, especially if surgery is in her future. She should definitely have a specialist.

Other quick tips - if she experiences neuropathy, acupuncture changed the game for me and made it much more tolerable. If she experiences nausea that can't be controlled with regular meds, medical marijuana fixed mine. Mindfulness practice helped me to sleep, even just the app Headspace was great.

I think it's great that you are on this forum and you'll find lots of great advice and help when you need it. Just being here helps her.

Best of luck to you both!

Kara

[junderhill]

Thank you Kara & Tracy! We are going through Siteman Cancer Center here in St. Louis, which is supposed to be the leader in our area. Our colon/rectal surgeon is board certified and we meet with 2 oncologists in our first visit (med onc & hepatic onc). My wife is feeling pretty well all things considered. She's had some discomfort for a while on her side just below her rib cage and had thought it just a byproduct of the 2 bowling ball boys she gave birth to, but turns out that's likely the liver mets. Bloating has really been common for the past month and can make clothes uncomfortable. Our faith keeps us grounded and the support we've received from family and friends has been incredibly encouraging. I pray you all are doing well in your battles and appreciate the insight!

[kandj]

We were in your shoes in Aug of 2015. My husband was diagnosed @ 36. No family history, no symptoms until 2 days before diagnosis (he had side pain, thought it was a pulled muscle). Low and behold, a mass in his colon and at the time, 9 mets throughout his liver. He started chemo, we consulted a liver surgeon at MD Anderson, and were told that surgery was not an option and unlikely to become one with just chemo due to the amount of mets and locations (scattered throughout the liver). We decided too seek a second opinion with Dr. Nancy Kemeny at Memorial Sloan Kettering in NYC, and I thank our lucky stars we did. He got the HAI pump to put chemo directly into his liver, shrinking the mets to the point he could have surgery. His initial tumor response with systemic chemo was 20% response rate (based on the colon mass they took out during the HAI pump surgery). Thanks to the HAI pump, his response rate increased to 75-85% when they took the liver mets out this past May. He had over 15 mets removed or ablated and that was made solely possible due to the HAI pump and the doctors at MSKCC. If surgery is not possible for your wife, and they are suggesting just systemic to shrink things, consider going to MSKCC for a second opinion. The earlier they start the process, the better the chances of her having a chance to beat this.

[mom_2_3]

Jeremy,

Congratulations on the birth of your boys! I am so sorry that a time that should be so joyous in your lives be impacted by the worry of a Stage IV colon cancer diagnosis. I was in your wife's shoes 8 years ago when our last child was born. She was delivered via c-section and through the surgery my OB/GYN discovered swollen lymph nodes beneath the uterus. This discovery led to the determination that I had Stage IV colon cancer with 5 mets spread to the liver (both sides). A year of chemo and surgery (colon resection, liver resection, HAI pump implantation) followed. As of this month I will be in remission for 8 years. My daughter just turned 8 in November and is in 2nd grade.

I reiterate what was said above. Dr. Nancy Kemeny is the pre-eminent colon cancer/liver mets oncologist. It would serve you well to initiate a second opinion from her. Likely she would concur with beginning a regimen of chemotherapy and then liver resectability to be determined after 4 treatments. Perhaps the HAI pump would be a great treatment for your wife. When I first started under her care she said that our plan was to do the 4 chemo treatments and then evaluate the efficacy of the FOLFOX. If the chemo was working we would continue but if it wasn't working she would schedule an HAI pump surgery to allow for the direct infusion of chemo to the liver. As it turns out the FOLFOX worked quite well for my mets (over 40% reduction) and she scheduled me for immediate liver resection. The mets were 95% and 99% necrotic. I had the HAI pump put in to hopefully avoid recurrence in the liver.

My advice other than seeing Dr. Kemeny would be this. Go for the gusto in terms of treatment. Unfortunately I have seen many come here who start on a less aggressive treatment path which eventually doesn't work and then they seek more aggressive treatments which may no longer be an option as disease progresses. Go for as much as your wife can handle. I asked my doctor to throw the kitchen sink at my disease.

I know it will be hard to find care and figure logistics for your children but I recall something Dr. K said to me. I was in her office getting my first scan results and she told me I would be in surgery 9 days from then and I would be away from my home for 8-9 days. I hemmed and hawed a bit as I thought of all the arrangements I would need to make in order to have my household run while I was away. Finding care for 3 young children can be difficult. She then asked me what was more important than saving my life.

Please PM me if I can be of any assistance. I would be more than happy to get on the phone with you and your wife.

Hugs,
Amy

[Nelbel]

I'm so sorry to hear of your news.

I had stage 3 rectal cancer so can't really speak to the process for your wife. I do recommend however getting two or even three opinions! For my surgery, we met with 3 surgeons and they were all very different in how they did their surgeries and one was extremely different in how much he would be cutting out of me.

Best of luck to you and your family.

[junderhill]

We were in your shoes in Aug of 2015. My husband was diagnosed @ 36. No family history, no symptoms until 2 days before diagnosis (he had side pain, thought it was a pulled muscle). Low and behold, a mass in his colon and at the time, 9 mets throughout his liver. He started chemo, we consulted a liver surgeon at MD Anderson, and were told that surgery was not an option and unlikely to become one with just chemo due to the amount of mets and locations (scattered throughout the liver). We decided too seek a second opinion with Dr. Nancy Kemeny at Memorial Sloan Kettering in NYC, and I thank our lucky stars we did. He got the HAI pump to put chemo directly into his liver, shrinking the mets to the point he could have surgery. His initial tumor response with systemic chemo was 20% response rate (based on the colon mass they took out during the HAI pump surgery). Thanks to the HAI pump, his response rate increased to 75-85% when they took the liver mets out this past May. He had over 15 mets removed or ablated and that was made solely possible due to the HAI pump and the doctors at MSKCC. If surgery is not possible for your wife, and they are suggesting just systemic to shrink things, consider going to MSKCC for a second opinion. The earlier they start the process, the better the chances of her having a chance to beat this.

Thanks so much for taking the time to respond. This has been such an encouragement to us today. I know that not everyone will respond the same way and we're far from out of the woods, but this gives us a lot of hope. Our onc did mention the possibility of a pump amongst other treatments but said we want to see how everything responds to this initial treatment. I did clarify that we are starting with FOLFOX + Avastin so I'm hoping that can get us going in the right direction. I'm not going to book our flight to NYC just yet, but if I feel like they're not being aggressive enough and waiving the white flag, we will be there in a heartbeat. What chemo cocktail did they initially start your husband on? When you say systemic, you're just talking standard chemo via port, right? I'm still learning all this. Can you help me understand the response rate you mentioned? Do you mean that only 20% of his mets responded (either shrunk or stabilized) on systemic and that via the pump the vast majority met the criteria or what exactly?

[fumaros]

I stayed at my local oncologist, but certainly got a second opinion at MSKCC. They confirmed the treatment program of my current oncologist and provided some very useful insight about my tumor - specifically its signet ring cell features and some other helpful bits of information. It is hard to travel to a major center but it is good to have the peace of mind having the best doctors validate your treatment regimen.
Also, it is helpful to get all the inpatient admission procedures (there is a lengthy review of all medical records and pathology samples) out of the way when you are not dealing with an emergency, that way if you ever need them it is a much quicker process to get access to their services.

[junderhill]

Jeremy,

Congratulations on the birth of your boys! I am so sorry that a time that should be so joyous in your lives be impacted by the worry of a Stage IV colon cancer diagnosis. I was in your wife's shoes 8 years ago when our last child was born. She was delivered via c-section and through the surgery my OB/GYN discovered swollen lymph nodes beneath the uterus. This discovery led to the determination that I had Stage IV colon cancer with 5 mets spread to the liver (both sides). A year of chemo and surgery (colon resection, liver resection, HAI pump implantation) followed. As of this month I will be in remission for 8 years. My daughter just turned 8 in November and is in 2nd grade.

I reiterate what was said above. Dr. Nancy Kemeny is the pre-eminent colon cancer/liver mets oncologist. It would serve you well to initiate a second opinion from her. Likely she would concur with beginning a regimen of chemotherapy and then liver resectability to be determined after 4 treatments. Perhaps the HAI pump would be a great treatment for your wife. When I first started under her care she said that our plan was to do the 4 chemo treatments and then evaluate the efficacy of the FOLFOX. If the chemo was working we would continue but if it wasn't working she would schedule an HAI pump surgery to allow for the direct infusion of chemo to the liver. As it turns out the FOLFOX worked quite well for my mets (over 40% reduction) and she scheduled me for immediate liver resection. The mets were 95% and 99% necrotic. I had the HAI pump put in to hopefully avoid recurrence in the liver.

My advice other than seeing Dr. Kemeny would be this. Go for the gusto in terms of treatment. Unfortunately I have seen many come here who start on a less aggressive treatment path which eventually doesn't work and then they seek more aggressive treatments which may no longer be an option as disease progresses. Go for as much as your wife can handle. I asked my doctor to throw the kitchen sink at my disease.

I know it will be hard to find care and figure logistics for your children but I recall something Dr. K said to me. I was in her office getting my first scan results and she told me I would be in surgery 9 days from then and I would be away from my home for 8-9 days. I hemmed and hawed a bit as I thought of all the arrangements I would need to make in order to have my household run while I was away. Finding care for 3 young children can be difficult. She then asked me what was more important than saving my life.

Please PM me if I can be of any assistance. I would be more than happy to get on the phone with you and your wife.

Hugs,
Amy

Amy,

Apparently I don't have PM permission yet since I just joined and haven't participated enough yet. Regardless, thank you so much for responding as your story has got me fired up and encouraged. Again, I know my wife my not respond in quite the same way, but there is hope. And sorry as I wasn't very clear in my previous post. Our boys are 6 and 3, I just meant my wife thought 1 of them had caused some internal havoc given how large they both were (just under 10 lbs) but it instead was likely the liver mets. When you initially started chemo, did they add Avastin at all?

Again, I don't think we'll plan to go to NYC just yet as our oncs here (Siteman in St. Louis) have mentioned these treatments and, based on your story, I will push the issue with them if I feel like they're backing off at all and not being aggressive. If they don't get on board, then we'll get on a plane. Thanks so much! You've made my day!

[crazylife]

I would like to reiterate that you should get her to Sloane Kettering in NY asap. Ask for Dr. Kemeny as your oncologist, Dr. DeMatteo for liver surgery. They have saved many lives and hers too.

Good luck!

[Lily em]

This sounds very similar to my wife's situation. She was diagnosed in April of 2016 (age 36) with rectal cancer that spread to her liver and a small amount to her lungs. Way too many liver mets to operate. The two biggest liver mets were 10 cm and 7 cm. She immediately got her port placed and began Folfox with Avastin. She finished 12 rounds this past October and got scans after every 4 rounds. Each scan showed shrinkage. On November 11th she had a rectal resection during which they removed her ovaries, appendix and lymph nodes. She recovered from that surgery in about 6 weeks. At that point they did another scan of the liver and found that most of the remaining tumors were in the right lobe with only 1 small one in the left lobe. All tumors appeared to be mostly calcified. They ran her CEA markers and they remained stable since her chemo stopped last October, around 30. We found an excellent liver surgeon that did a right lobectomy on 01/05/2017. They removed most of the right lobe of her liver and did a small wedge removal of the spot on the left lobe. Recovery has been slower with 2 back to back major surgeries. We spent 11 days in the hospital. She just had blood work done last week and liver functions ALT, AST ect. are all perfect. Her CEA Tumor markers are now 2.6!! (Anything below 3.8 indicates no active cancer) She gets another PET/CT scan in early March 2017 to verify what the tumor makers are indicating. At that point they will determine the next course of action. Its has been a long hard 10 months but for us there seems to be a light at the end of the tunnel.
Forgot to add that my wife's CEA started at 158 when diagnosed

[junderhill]

This sounds very similar to my wife's situation. She was diagnosed in April of 2016 (age 36) with rectal cancer that spread to her liver and a small amount to her lungs. Way too many liver mets to operate. The two biggest liver mets were 10 cm and 7 cm. She immediately got her port placed and began Folfox with Avastin. She finished 12 rounds this past October and got scans after every 4 rounds. Each scan showed shrinkage. On November 11th she had a rectal resection during which they removed her ovaries, appendix and lymph nodes. She recovered from that surgery in about 6 weeks. At that point they did another scan of the liver and found that most of the remaining tumors were in the right lobe with only 1 small one in the left lobe. All tumors appeared to be mostly calcified. They ran her CEA markers and they remained stable since her chemo stopped last October, around 30. We found an excellent liver surgeon that did a right lobectomy on 01/05/2017. They removed most of the right lobe of her liver and did a small wedge removal of the spot on the left lobe. Recovery has been slower with 2 back to back major surgeries. We spent 11 days in the hospital. She just had blood work done last week and liver functions ALT, AST ect. are all perfect. Her CEA Tumor markers are now 2.6!! (Anything below 3.8 indicates no active cancer) She gets another PET/CT scan in early March 2017 to verify what the tumor makers are indicating. At that point they will determine the next course of action. Its has been a long hard 10 months but for us there seems to be a light at the end of the tunnel.

You all, I am so glad I found this site. This has been the absolute best day since we received our diagnosis. Your all's stories are so encouraging and uplifting. The road is still going to be tough, but hearing that it's not just endless darkness and that there could very well be some light there is awesome. Lily em, thanks so much for sharing man. Praise God! I'm so glad to hear your wife is responding well. What about her lung mets? Did chemo knock those out completely? Any resect there?

Again, kandj, Kara, Tracy, Amy, Nelbel - THANK YOU!!!

"Then your light will break forth like the dawn, and your healing will quickly appear; then your righteousness will go before you, and the glory of the Lord will be your rear guard. Then you will call, and the Lord will answer; you will cry for help, and he will say: Here am I." Isaiah 58:8-9b

[BeansMama]

So sorry you have had to find us but glad you did. You will find a wealth of knowledge and support from the members of this site.

Good doctors are very important. At her young age you want a doctor that will treat her cancer very aggressively.

Chemo side effects vary for everyone. You will most likely find that she will have a big change in the way things taste. That period for us was difficult. Just keep trying different things until you find what works. I went through a period where all I could eat were spaghetti o's oddly enough. It was the only thing that didn't make me vomit. I also had an issue with everything tasting metallic because of the chemo. I found drinks with a very strong flavor worked best to get past that metallic taste. I couldn't even drink just a plain bottle of water.

Keeping her hydrated during chemo is very important, she needs the fluids to flush the chemo out of her system. Ask your oncologist about the availability of IV fluids in the event she is unable to drink enough. I always got a bag of fluids on my disconnect day because I did have issues with getting enough. I had to go to the ER a few times because it was the weekend and I needed them. My oncologists office has an open policy on IV fluids. I can go at any time without an appointment to get them as long as the infusion room is open.

I have a very large liver tumor that currently is inoperable due to size and location. It is actually between the lobes of my liver and has encompassed my livers vascular system. It is possible to go from inoperable to operable. I actually have a surgical plan, we just need to get my tumor under control and to shrink some. Once we achieve that I will get my surgery.

I will add you and your wife to my prayer list.

[mariane]

Hi,
I would recommend you to take your wife to MSKCC.
I am one of the newer Dr Kemeny's patients. I was diagnosed in June 2015 with 10+ liver mets as well. The largest measured 7.5cm. One of my tumors started pressing bile ducts so I had very slight increase of bilirubin. My first oncologist told me I was inoperable, incurable. I was offered and underwent palliative rectal tumor resection to prolong my life (decrease tumor burden). I sent my scan and lab results to Dr Kemeny and 2 weeks after my resection I had an appointment with her. I flew from Europe to see her.She decided to give me FOLFIRINOX chemo without Avastin. Dr Kemeny usually wants to re-scan after 4 chemo treatments to check the response and do surgery ASAP. Avastin increases response to chemo but the chemo break needs to be longer because of the danger of bleeding during surgery. I got 95% pathological response to FOLFIRINOX chemo and had hepatic pump implanted in 10/2015. My CEA went down <2 in MSKCC at that time from 140 when I was diagnosed and stayed there ever since. I had 2 stage liver surgery because of tumor burden. I had 100% pathological response after FUDR and I am in remission (no evidence of cancer) since 05/2016. I am off chemo since 10/2016 and had another clean scan and low CEA 1.1 last Sunday.
My children ( twins) were 6 when I got diagnosed. They will be 8 soon and I am here with them. We are planning trip to Grand Canyon for spring break. In 2015 I thought my life ended, no more family trips, no more normalsy.
I wish you both lots of strength, good luck and best response to chemo ever!

Sending prayers,