Husband has colon cancer, starts chemo soon: I need support

elainehd

Dear friends,

My husband has just been diagnosed with a highly metastic form of colon cancer.  I have all the details, if that helps.  I am used to getting information and support from similar forums for my own health issues.  So I am hoping I can find the same thing here.  His prognosis is not good, and I'm still trying to absorb what this will mean for him.

Thank you, elainehd

Trubrit

Welcome, Elainehd

I am sorry about your husband's diagnoisis and for your health battles.  

We certainly are here to support you as your husband moves forward with his treatments. 

It would be great to have more info; espeically what treatment plan he will be having, as you will be sure to find someone - many someones - who have travelled the same route.  

Even though our bodies handle things differently, there is sure to be common ground. 

Look forward to hearing from you. 

Tru

shu273

Can you provide some detail

What is his diagnosis? Has he had surgery? Do you have a team and a treatment plan? 

elainehd

diagnosis and possible treatment plan for husband

From his doctor's notes, written  yesterday, 2/6/20:

Diagnosis: biopsy confirmed invasive adenocarcinoma, MSI high, but with mL H1 methylation.

Pathology: the pathology showed a stage II, T3N0, MSI high, cancer

Prognosis:  cancer is mucinous, signet ring features, plus, poorly differentiated, with lymphovascular invasion, all pointing to a high risk feature, with increasing risk of distant metastases. Discussed overall, the risk of recurrent stage II colon cancer is approximately 15 to 25%, with his cancer features, I anticipate it will be at the high end. 

Treatment: oxaliplatin plus 5-FU or Xeloda

 

Hope this helps.

 

elainehd

danker

Age

You don't tell us your husband's age.  My history should give you great hope.  Dxed at age 77 with colon cancer.  Bumpy ride that first year, But colonoscopy after treatmen was NED(no evedence of disease).

Still Ned and soon to be 88.  So you see, it can be beat!! Just take it a day at a time and hope for the best..  Good luck to you both!!~

Trubrit

elainehd said:

diagnosis and possible treatment plan for husband

From his doctor's notes, written  yesterday, 2/6/20:

Diagnosis: biopsy confirmed invasive adenocarcinoma, MSI high, but with mL H1 methylation.

Pathology: the pathology showed a stage II, T3N0, MSI high, cancer

Prognosis:  cancer is mucinous, signet ring features, plus, poorly differentiated, with lymphovascular invasion, all pointing to a high risk feature, with increasing risk of distant metastases. Discussed overall, the risk of recurrent stage II colon cancer is approximately 15 to 25%, with his cancer features, I anticipate it will be at the high end. 

Treatment: oxaliplatin plus 5-FU or Xeloda

 

Hope this helps.

 

elainehd

Jump on it

My first bit of advice is to jump on the positive first and foremost. Getting something positve in your head, really does help as things come along. 

So, you say his Cancer is 'highly metastatic'.  That sounds bad, right.  So his report says, among other things 'Stage II, and that is good.  If I were you I would focus on the Stage II and move forward with that in mind.  

Many many many of our Stage II forum members do not post any more, because all is well, and they have moved on in their lives.  Folks, like our Danker, Stage III post, but many of them no longer visit the forum. The remainder, like myself, are Stage IV and 'running with the bulls'.  I have been NED - No Evidence of Disease - for FIVE years. Others post here, that are also NED and Stage IV, and more post who are activly in treatment, some for life, and others newly diagnosed.

We have many Stage III & Stage IV survivors, and your husband and Stage II, well there you go, he can join the crowd. 

Now, I am not saying he doesn't have anyhting to wrory abuot, because he does. Cancer is Cancer, and it can bite you, no matter the stage. 

Stick with us, and we will help you and hubby through the tough times - and the good. 

Remember, postive helps. 

Tru

shu273

elainehd said:

diagnosis and possible treatment plan for husband

From his doctor's notes, written  yesterday, 2/6/20:

Diagnosis: biopsy confirmed invasive adenocarcinoma, MSI high, but with mL H1 methylation.

Pathology: the pathology showed a stage II, T3N0, MSI high, cancer

Prognosis:  cancer is mucinous, signet ring features, plus, poorly differentiated, with lymphovascular invasion, all pointing to a high risk feature, with increasing risk of distant metastases. Discussed overall, the risk of recurrent stage II colon cancer is approximately 15 to 25%, with his cancer features, I anticipate it will be at the high end. 

Treatment: oxaliplatin plus 5-FU or Xeloda

 

Hope this helps.

 

elainehd

a few more question

How was the  cancer discovered? Did they surgically remove the tumor and if so what location. Did they find any lymph nodes with cancer? n0 should mean that they did not and that is good!! 

AnneO1965

I'm 54, soon to be 55. Was

I'm 54, soon to be 55. Was diagnosed at 53 with stage IIIB. I had surgery in June of last year and got my first NED in November of last year. At the end of this month I'll go for my second scan and hopefully it will be NED too.

Best of luck to you and your hubby as you go on this journey. It's a tough one, but hopefully the both of you will have wonderful days along with the not so great days.

Twinzma

So sorry you are here

It's a lot to grasp when your loved one is diagnosed. My husband was diagnosed over 2 years ago with stage 4. Right now after numerous failed treatments they have him on a drug that is doing wonders for him. There is so much out there for him to try. Stage 2, that's scary BUT it's beatable and many have gotten to NEDsville. Shoot there are several stage 4 folks here that have are now NED. Please, if I can offer you a little advice, DON'T read the statistics don't look at the possible outcomes. Just focus on the now. I know it's hard but from my perspective this is a marathon and not a sprint....A lot of it is uphill too and you want to save your mental strength for those times. Think about joining a caretaker support group as well, they have been very comforting to me.. FB has a great group I am in if you are interested......"Colon Cancer Caregiver Support group".... https://www.facebook.com/groups/724444667687116/?ref=group_header

elainehd

Thanks

Dear Friends,

Your kind words and encouragement mean so much to me.  I've been absorbing this unexpected news, and you have helped me expand my horizon beyond the 'bad news'.

My husband, John,  is 80 years old.  His Robotic Laparascopic surgery was on January 3, 2020.  The surgery was amazingly easy, and he was able to come home the next day.

For a month we thought that this was the end of the story, you see.  His family has an extensive history of uncomplicated colon cancer surgery, with no more treatment, and long happy lives.   Alas, John's case will require more treatment.

He saw his oncologist on Thursday, and we got the news.  Then his doctor called against yesterday, asking to see him as soon as possible, before the scheduled appointment next month.  We don't know why he wants to see him again sooner.

From recent testing, John was discovered to have a genetic defect in the process that corrects mistakes in DNA replication.  This explains why he has been diagnosed with three cancers in the past three years, we think.

Anyway, we are busy with our lives, of course.  John is a retired PhD immunologist who taught and did research for 25 years at a Medical Center in Boston.  We live in a Senior Living Community and yesterday he gave a lecture on The Healthy Heart, next week he will discuss the Corona Virus.  I play bridge and Scrabble, exercise in the pool and gym, and we are surrounded by caring residents, and professional staff who are well versed in providing support.

Most fortunately of all we have excellent insurance that pays for everything.

Regards, elainehd

SophDan2

The good news is it is Stage 2

Hi Elaine,

I was diagnosed with the same cancer (MSI High), only at Stage 3C. I dealt with Mass General Hospital in Boston. MSI high is a rare form of colon cancer cases, however, I was told by my Oncologist that it responds better to the treatment. MSI high basically means it it a faster growing cancer. I too, was offered and took Folfox 5FU; my treatments were every other week (for 48 hours) for a 6 month period. The main component of the treatment with side effects is oxaliplatin. As long as your husband can tolerate the treatments (very easy in the earlier treatments), I believe he can conquer the beast, as Stage 2 is an indication that it is still contained to a degree (am I correct?).

I had surgery to remove the cancerous portion of my colon, along with 25 lymph nodes. 6 of the nodes also had cancer in them, which is why I received the Stage 3C label.

You definitely came to the correct forum as Trubrit stated; we have all dealt with this beast in different stages and treatments and there are many that can help you.

Remember, it is important for your husband to be involved with his treatment, as that is something he has a say and control over. Can't worry about about what you can't control!

Barry 

elainehd

Thank you, Barry

Thank you for such kind and encouraging words.  My husband has the same Oncologist he worked with to put his Chronic Lymphocytic Leukemia into Total Remission, in 2018. Because he is completely versed in the Immunology and all medical issues, he will be highly involved with his treatment plan.

All of our doctors are Duke Medical Center doctors, but we could go to Mass General if we chose.  We lived in Boston for 25 years, during all of which my husband was on the faculty of Boston Medical School. But right now there is no plan to change treatment centers.

I think the most important aspect of his diagnosis is that he has signet ring carcinoma that is also MSI High.  I, of course, don't understand it all, but from what I read that is a significant factor in his diagnosis.

In addtion his cancer was found to be T3NO, no lymph node involvement, BUT the cancer had gone through the wall of the colon: the higher the T number, the more it has grown into nearby tissues.  The T range is 1 -4.

He sees his Oncologist again next Wednesday, so he may know more about the plan of treatment.

I'll keep you all posted.

Again, many many thanks.

elainehd

 

Annabelle41415

I'm so sorry

I'm so sorry to hear of your husband's diagnosis.  You have come to a very caring board that can offer a lot of support. It does sound like you are approaching this with some good doctors.  Wishing the best for your husband.

Kim

ellend

Sorry, but you have found a board with good and caring people

So sorry to hear about your husband's diagnosis. The people on this board have a lot of information and are very caring. They helped me through my ordeal. I was stage II rectal cancer in late 2015. All the lymph nodes that were taken out during surgery (19 I think) were all clear, so didn't have lymphatic involvement. I have been NED since then.

I did the 8 week mop-up chemo even though there was a question as to whether it was really needed or not. It was FOLFOX and 5FU bolus. I had to have a device attached after the chemo infusion that would continue to infuse the 5-FU for 48 hours afterward. Different people react to chemo in different ways. The chemo nurses were able to control my nausea by infusing anti-nausea drugs before starting the chemo. Be sure and talk to them about any negative side effect because they might be able to help. I also had prescription anti-nausea drugs at home, just in case. There are some weird side effects from the oxypilatin that seem to be fairly common such as sensitivity to cold. One thing to watch out for is peripheral neuropathy. I have some minor lingering effects, but some get it much worse.

Good luck with your journey. I hope all goes well with the chemo.

Ellen

Capox Dude

For what it is worth

Ou might inquire about Xeloda for three months rather than Folfox for 6.   I found it acceptable to take, and the risk of neuropathy is less as it is a 3 month rather than a 6 month treatmnet.   I was able to work the whole time. Good luck.  The folks here are wonderful, and are a great source of support and information.

Here is some information. In elderly patients, maybe Xeloda is not the way to go after all.  His oncologist will know. Here is some good reading. 

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6650188/

 

elainehd

Learning, learning!

Dear Capox Dude: So, I've learned today that FOLFOX is the acronym for FOL = folic acid (a B Vitamin), F = 5-FU (a chemo agent), OX = Oxaliplatin (especially for colon cancer, it seems.  It is the most neurotoxic chemo and at the origin of peripheral neuropathies).

Xeloda is also being considered, but only along with Oxapilatin, which the serious neurotoxin.  So Oxapilatin is his Oncologist's drug of choice.

Hair loss also seems to be mostly associated (but rarely) with Oxapilatin.

Dear ellend: NED since 2015, how marvelous!  John hasd 21 lymph nodes tested, and there were no cancer cells.  The aggressive nature of his cancer is that is was very invasive, and has several serious features of a rare version (1%) of adeocarcinomas.   We thought that 21 lymph nodes with no evidence was the end result of pathology testing, and we were prematurely celebrating   

And, oh dear, my husband is already cold while I am hot.  I am going to have to get used to maintaining our apartment at 75 or above.  Well, of course, small price to pay.

In the meantime, John is keeping busy and shows no outward signs of distress.  It is early days, of course.

The best measures for stress, I've found are:

Exercise

Meaningful activities, hobbies

Close friends, family and support groups like this

Helping other people!

Talking with an impartial counselor on a regular basis

Medication (antidepressant)

As I've mentioned, I'm seriously disabled.  I have profound peripheral neuropathy (caused by a 'raging' immune system which attacks my organs/systems)  My legs are most affected (severely) and I wear braces and walk with a walker. My moisture producing system, lungs, bladder, skin, and gastrointestinal system are also damaged.  This began, mostly, after I turned 65.  

I also have Primary Immune Deficiency and have IVIG at home every 4 weeks, and will for life.  The nurse is coming today.

So I have implemented every one of the coping mechanisms.

elainehd

 

 

 

 

 

Trubrit

elainehd said:

Learning, learning!

Dear Capox Dude: So, I've learned today that FOLFOX is the acronym for FOL = folic acid (a B Vitamin), F = 5-FU (a chemo agent), OX = Oxaliplatin (especially for colon cancer, it seems.  It is the most neurotoxic chemo and at the origin of peripheral neuropathies).

Xeloda is also being considered, but only along with Oxapilatin, which the serious neurotoxin.  So Oxapilatin is his Oncologist's drug of choice.

Hair loss also seems to be mostly associated (but rarely) with Oxapilatin.

Dear ellend: NED since 2015, how marvelous!  John hasd 21 lymph nodes tested, and there were no cancer cells.  The aggressive nature of his cancer is that is was very invasive, and has several serious features of a rare version (1%) of adeocarcinomas.   We thought that 21 lymph nodes with no evidence was the end result of pathology testing, and we were prematurely celebrating   

And, oh dear, my husband is already cold while I am hot.  I am going to have to get used to maintaining our apartment at 75 or above.  Well, of course, small price to pay.

In the meantime, John is keeping busy and shows no outward signs of distress.  It is early days, of course.

The best measures for stress, I've found are:

Exercise

Meaningful activities, hobbies

Close friends, family and support groups like this

Helping other people!

Talking with an impartial counselor on a regular basis

Medication (antidepressant)

As I've mentioned, I'm seriously disabled.  I have profound peripheral neuropathy (caused by a 'raging' immune system which attacks my organs/systems)  My legs are most affected (severely) and I wear braces and walk with a walker. My moisture producing system, lungs, bladder, skin, and gastrointestinal system are also damaged.  This began, mostly, after I turned 65.  

I also have Primary Immune Deficiency and have IVIG at home every 4 weeks, and will for life.  The nurse is coming today.

So I have implemented every one of the coping mechanisms.

elainehd

 

 

 

 

 

They say it stinks, getting older

And they are right. 

I am so sorry that both you and your husband are facing such awful medical issues.  You do seem to have a good attitude though, and that really helps - well, for the most part.  It is just natural to get down about things though, so I am glad that you have your coping list. It is a good list. 

I think hair loss would be the least concern. Most of my head hair fell out, came back in and then fell out again - not all of it, and I no longer look like Gollum.  Pretty much all of my body hair fell out though. That was a weird experience, but not bad. At least not as bad as some of the Oxaliplatin side effects. 

It is a rough drug for sure. 

Tru

elainehd

Husband NOT starting chemo: wait and watch.

John saw his oncologist this morning, and the decision is to put off chemotherapy with Oxaliplatin.  The rationale is that Oxaliplatin isn't really that effective against his particular cancer.  

The plan is to wait until there is more evidence of cancer activity as shown by blood tests.  Then the treatment would be with a monoclonal antibody drug, which may be more effective.  

And of course I guess he and his doctor are hoping for a long delay in the need for any treatment.

I am surprised, but I'm pleased that John is working closely with his doctor to make these decisions.  They've been working together since June, 2016, so they are comfortable with each other.  His oncologist treated him with a monocloncal antibody in 2018, putting his Chronic Lymphostatic Leukemia into Total Remission.

John said that if/when his cancer is metastatic, it will invade his liver.  He really seems very calm about this!  I wonder what the monoclonal antibody is.....maybe I can research that....

You've all been so helpful and supportive, and encouraging,  I feel a lot calmer now than last week, for sure.

Regards, Elainehd

jeanie18

Twinzma said:

So sorry you are here

It's a lot to grasp when your loved one is diagnosed. My husband was diagnosed over 2 years ago with stage 4. Right now after numerous failed treatments they have him on a drug that is doing wonders for him. There is so much out there for him to try. Stage 2, that's scary BUT it's beatable and many have gotten to NEDsville. Shoot there are several stage 4 folks here that have are now NED. Please, if I can offer you a little advice, DON'T read the statistics don't look at the possible outcomes. Just focus on the now. I know it's hard but from my perspective this is a marathon and not a sprint....A lot of it is uphill too and you want to save your mental strength for those times. Think about joining a caretaker support group as well, they have been very comforting to me.. FB has a great group I am in if you are interested......"Colon Cancer Caregiver Support group".... https://www.facebook.com/groups/724444667687116/?ref=group_header

My husband was diagnosed

My husband was diagnosed Stage 4 two years ago. And has had numerous failed treatments.  What treatment is your husband on now?