My fiance , 33, gets Stage 4 diagnosis...

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StrongEnough
Posts: 12
Joined: Tue Nov 10, 2020 9:15 pm

My fiance , 33, gets Stage 4 diagnosis...

Postby StrongEnough » Tue Nov 10, 2020 9:58 pm

So my fiance was having some bleeding and diarrhea over the summer , nothing too bad. We chalked it up to stress with work and covid. Finally , she had enough and saw a GP. Mind you this woman has never had anything wrong before , other than cold or stomach bugs. Did some tests , suggested she get a colonoscopy. Over 4 days , we found out she might have cancer to being diagnosed with stage 4 (spread to her liver , maybe also thyroid. The biopsy is soon). Was a really big shock obviously.

She started chemo this past Friday. She didn't make it through her 7 hour chemo session. She started throwing up about 3 hours in. Couldn't get her to stop. She ended up in the ER. Her oncologist said they will dial it back and not be so aggressive. Basically more bad news.

She's scared. She looked up the statistics and that freaked her out more. I'm scared. I'm trying to be strong and reassuring yet I just don't know.

I have spina bifida and currently can walk with aids , but it is quite debilitating and painful. I also have a rare nerve disorder called CRPS. She has been by my side and helped me for the past 13 years. Now I want to be there for her. I've been to every appointment. 2 hours. 4 hours. 8 hours. It didn't matter. But I can't hide the toll it has taken on my body. She knows and I know she feels guilty. It doesn't matter what I say. Even around the house , some things are extremely painful and difficult for me and I tried to ya know do more. Then she feels bad about that. I just want her to concentrate on her , she needs that energy. Instead it becomes fear. Fear of death. Fear of what happens to me.

This will be a long road. Multiple surgeries, Chemo , medication etc. I'm used to being the 'hurt' one. The one getting multiple surgeries. Taking lots of medications. I feel guilty that this isn't happening to me. Helpless. Why her? I honestlydon't really even know if I have questions or even know why I found this place or typed this message. Overwhelmed I guess. Maybe ideas or experiences? Success stories? Spirit bolsters? I don't know. I would take on the world if I had to , but I just need to be strong enough for her.

Lee
Posts: 6165
Joined: Sun Apr 16, 2006 4:09 pm

Re: My fiance , 33, gets Stage 4 diagnosis...

Postby Lee » Wed Nov 11, 2020 12:32 am

StrongEnough wrote:So my fiance was having some bleeding and diarrhea over the summer , nothing too bad. We chalked it up to stress with work and covid. Finally , she had enough and saw a GP. Mind you this woman has never had anything wrong before , other than cold or stomach bugs. Did some tests , suggested she get a colonoscopy. Over 4 days , we found out she might have cancer to being diagnosed with stage 4 (spread to her liver , maybe also thyroid. The biopsy is soon). Was a really big shock obviously.

She started chemo this past Friday. She didn't make it through her 7 hour chemo session. She started throwing up about 3 hours in. Couldn't get her to stop. She ended up in the ER. Her oncologist said they will dial it back and not be so aggressive. Basically more bad news.

.


Have they determined that she does indeed have cancer or "just might"? a bit confused here. Did she have a colonoscopy? What other test has she had done. This type of cancer does not generally spread to the thyroid. What chemo is she on? Let's start there.

Lee
rectal cancer - April 2004
46 yrs old at diagnoses
stage III C - 6/13 lymph positive
radiation - 6 weeks
surgery - August 2004/hernia repair 2014
permanent colostomy
chemo - FOLFOX
NED - 16 years and counting!

Lee
Posts: 6165
Joined: Sun Apr 16, 2006 4:09 pm

Re: My fiance , 33, gets Stage 4 diagnosis...

Postby Lee » Wed Nov 11, 2020 12:38 am

Lee wrote:
StrongEnough wrote:So my fiance was having some bleeding and diarrhea over the summer , nothing too bad. We chalked it up to stress with work and covid. Finally , she had enough and saw a GP. Mind you this woman has never had anything wrong before , other than cold or stomach bugs. Did some tests , suggested she get a colonoscopy. Over 4 days , we found out she might have cancer to being diagnosed with stage 4 (spread to her liver , maybe also thyroid. The biopsy is soon). Was a really big shock obviously.

She started chemo this past Friday. She didn't make it through her 7 hour chemo session. She started throwing up about 3 hours in. Couldn't get her to stop. She ended up in the ER. Her oncologist said they will dial it back and not be so aggressive. Basically more bad news.

.


Have they determined that she does indeed have cancer or "just might"? a bit confused here. Did she have a colonoscopy? What other test has she had done. This type of cancer does not generally spread to the thyroid. What chemo is she on? Let's start there.

Avoid Dr. Google stats, 5-10 yrs behind the curve.

Lee
rectal cancer - April 2004
46 yrs old at diagnoses
stage III C - 6/13 lymph positive
radiation - 6 weeks
surgery - August 2004/hernia repair 2014
permanent colostomy
chemo - FOLFOX
NED - 16 years and counting!

StrongEnough
Posts: 12
Joined: Tue Nov 10, 2020 9:15 pm

Re: My fiance , 33, gets Stage 4 diagnosis...

Postby StrongEnough » Wed Nov 11, 2020 2:46 am


Have they determined that she does indeed have cancer or "just might"? a bit confused here. Did she have a colonoscopy? What other test has she had done. This type of cancer does not generally spread to the thyroid. What chemo is she on? Let's start there.

Avoid Dr. Google stats, 5-10 yrs behind the curve.

Lee


Oh sorry about that. Been a whirlwind few weeks. Think I was a bit scatterbrained. Thank you for the reply. She does have stage IV Colon cancer that has spread to her liver. It was diagnosed during the colonoscopy and the liver was found during a pet scan and a biopsy confirmed it. The thyroid showed an abnormality as well , but for now the Endo just wants an ultrasound and a biopsy. She has done a myriad of blood tests as well. The thought process is to use chemo to shrink the masses and then remove what's left on the liver and to remove the large mass in the colon. Her chemo was FOLFOXIRI. Her oncologist is going to dial it back and just use FOLFOX.

And yep she checked Dr.Google. I did too. I knew better, but I did. It was easier in a detached sort of way. I know it's full of outdated(or wrong) info.

Thank you for taking the time.

stu
Posts: 1396
Joined: Sat Aug 17, 2013 5:46 pm

Re: My fiance , 33, gets Stage 4 diagnosis...

Postby stu » Wed Nov 11, 2020 3:53 am

Hi and welcome ,

I think at the beginning you are staring down a long dark tunnel wondering if you have the strength to meet the needs of the other person as they go through treatment . It’s just too overwhelming and that’s without dealing with a physical disability yourself . I had to learn the art of strength for just one day ! Then the next day I would start all over again and slowly but surely we made it through a week , a month , a year and before you know it years ! My mum is a stage 4 patient in her 11 year. My father had a stroke two weeks before my mum and I had young children . It felt too much but i inches forward some days and others days did better . If people offer support , grab it . I practically told the postman everything one day and he was a good counsellor .
They will sort the sickness out and adjust her dose . My mum had a reduced dose the second year and it was just as effective . If only we had know the first year . But you don’t and you are doing the very best you can in difficult circumstances.
Love her well , that’s some days all we can do . And don’t feel guilty about something that is out with your control . My friend is dying . She text me one day to say the house is out of control . By the end of the day my sister and I had it sorted . Let others help with tasks where possible. Particularly when Covid lifts a bit in the future . Until then stay safe and do what’s necessary.

We are here to support you both.
Stu
supporter to my mum who lives a great life despite a difficult diagnosis
stage4 2009 significant spread to liver
2010 colon /liver resection
chemo following recurrence
73% of liver removed
enjoying life treatment free
2016 lung resection
Oct 2017 nice clear scan . Two lung nodules disappeared
Oct 2018. Another clear scan .

boxhill
Posts: 641
Joined: Fri Apr 06, 2018 11:40 am

Re: My fiance , 33, gets Stage 4 diagnosis...

Postby boxhill » Wed Nov 11, 2020 11:51 am

Wonderful advice here from wonderful people. And you are clearly one of them. Hugs.

First, I completely endorse Stu's advice: ask friends and family to help you by shopping, coming over to clean the bathrooms, the kitchen, or the whole house, or bringing some meals you can freeze and heat up easily, such as soups. If you are members of a church, ask there. There will be a committee that cares for members who are in need of help of any kind. Make it clear what you need help with. And that can include people to unburden yourself to. For a lot of us humans, asking for help is hard. But it is a good thing.

Like Lee, I would find it helpful to understand more about your fiancee's cancer and disease. Where is her primary tumor, what tests has she had, has she had a resection, is one planned, what is the goal of her chemo and what is it, etc. AFAIK, it is unusual for someone's first chemo to last 7 hours. Did she have a pre-diagnosed sensitivity to one of the chemo drugs that led them to stretch the dose out?

Best of luck to both of you.

PS, this may be out of line, but how about the two of you just go ahead and get married? :D I see it as a vote of confidence in your relationship that might help both of you.
F, 64 at DX CRC Stage IV
3/17/18 blockage, r hemi
11 of 25 nodes,5 mesentery nodes
5mm liver met out
pT3 pN2b pM1
BRAF wild, KRAS G12D
dMMR, MSI-H
5/18 FOLFOX
7/18 and 11/18 CT NED
12/18 MRI 5mm liver mass, 2 lymph nodes in porta hepatis
12/31/18 Keytruda
6/19 Multiphasic CT LNs normal, Liver stable
6/28/19 Pause Key, predisone for joint pain
7/31/19 Restart Key
9/19 CT stable
Pain: all fails but Celebrex
12/23/19 CT stable
5/19 MRI stable/NED
Stop Key
8/20 MRI NED

utahgal7
Posts: 26
Joined: Fri Sep 11, 2020 12:04 pm

Re: My fiance , 33, gets Stage 4 diagnosis...

Postby utahgal7 » Wed Nov 11, 2020 12:18 pm

Welcome,

I found it helpful to not think too far in advance. Take each day as it comes. Are there any support groups in your area for caregivers? This might be helpful to you. Also, try not to be so hard on yourself. You are doing the best you can in an extremely difficult situation to support your fiance. I know you are overwhelmed. You are strong enough! Repeat this to yourself....I am strong enough!

Now is the time to lean on your family and friends...sometimes family and friends want to help but they don't know how to help. I echo the previous post that you need to be very specific about what you need. Also, I don't know if your fiance's hospital has a cancer library. If so, you can check out materials that could help you learn more about cancer.

Best of luck to you and your fiance!
02/20 Rectal Cancer Diagnosis
03/20 CEA 2.7 ST Radiation - 25Gy over 5 days
04/20 LAR surgery w/ ileostomy (6 lymph nodes retrieved, 1 node positive for cancer)
04/20 T3N1M0; MSS
05/20 CAPEOX (had to discontinue because Oxaliplatin caused temporary blindness in left eye)
06/20 CEA 0.9
08/20 Ileostomy reversal
09/20 CEA 1.4, CT chest/abdomen/pelvis; suspicious areas in liver
10/20 MRI liver; dx hemangioma

Lee
Posts: 6165
Joined: Sun Apr 16, 2006 4:09 pm

Re: My fiance , 33, gets Stage 4 diagnosis...

Postby Lee » Wed Nov 11, 2020 1:46 pm

Thank you, i understand better know.

Not sure where you are living, butt consider getting a second opinion at a major cancer hospital or cancer center. They tend to be on the leading edge of tomorrow's standard care. Because of her age, they can throw the kitchen sink at her. Has anyone mentioned a HAI pump? IT's place directly into the liver & chemo goes directly into the liver. If not, may be something to look into. Many people on this board have reached NED (No Evidence Detected) with this pump.

Know that many new advancements have been made in the last few years. At one time, one chemo served all types of colon cancer. Today there are many different types of chemo and options to treat colon cancer. Have they done any testing on the tumor yet? Has anyone mentioned getting a "Foundation One" test yet?

Know that people can beat this cancer. Also for many people, it is sometimes treated like a cronic condition. Butt they have to address those liver tumors.

Again looking into getting a 2nd opinion at a major cancer hospital. Where are you?

Hope this helps. Don't give up the hope.

Lee
rectal cancer - April 2004
46 yrs old at diagnoses
stage III C - 6/13 lymph positive
radiation - 6 weeks
surgery - August 2004/hernia repair 2014
permanent colostomy
chemo - FOLFOX
NED - 16 years and counting!

StrongEnough
Posts: 12
Joined: Tue Nov 10, 2020 9:15 pm

Re: My fiance , 33, gets Stage 4 diagnosis...

Postby StrongEnough » Wed Nov 11, 2020 4:02 pm

Wow thank you all for the posts. I definitely think you are right Stu , it does feel that way. I think I came here to unload. I don't really talk about my feelings besides to her and I'm more of a stoic person in general. With my conditions , it's easy. People tell me all the time they can't believe I can get through my disabilities with a smile and such happiness. I'm finding that so much harder to do with her and I think it's more important than ever to be that sort of stoic figure during these appointments, so it's frustrating. Letting others help me was never an option before , now I think you are right. I'm sad to hear about your friend. I hope your family is ok and am so happy to hear about your mom. 11 years!

Boxhill: thank you , I think that is great advice. I think I need to let some of my pride go and do some of the things you suggested. She has not had a resection. The goal of chemo is to mainly shrink the liver tumors to have an easier and safer surgery to remove them. The colon tumor is the primary. It is large and has a lymph node involved , but they believe the removal will be very successful and they should be able to staple the intestines, so everything should be ok for now there. She didn't have any other conditions or sensitivity.

As far as marriage , truthfully that's my fault. Mainly it came down to my bills and disability. It took almost 10 years to get disability to kick in. I always had small issues with spina bifida, I grew up in a children's hospital and was in a wheelchair for a few years. 25 hours of therapy a week at least. Long story short, I ended up being able to not just walk but play sports with no aids. I ended up becoming a firefighter and had an accident. Broke my leg,ankle,hip, and back. Ever since that , it's like my spine never came back around and I started having all the symptoms of spina bifida coming back. Social services dragged their feet , kept denying me, so I said screw you and I tried to work. What a mistake. Eventually I just couldn't do it , so I started applying again, which I had to start back at the beginning basically. Finally got it. During that time we didn't want them to come after her or consider her for payments or things like that. Eventually the years ran together and here we are. I think you are right though and my plan is to do so shortly.

Utahgal7 : wow you are right. I started to think ahead and that didn't help anything. It's like with her , I forgot how I got myself through each day. One day at a time. Sometimes one hour at a time. I guess my name here was subliminal in a way, a reminder to myself. I might always be too hard on myself. I also know I don't 'have to' be at every appointment , but I know this is all new for her , let alone how scared she is because it's cancer. So I feel it's my place to be that strong reassuring presence. During chemo I left though , frankly because I wanted her to try and rest/sleep. Honestly it is so hard to be specific about our needs. It's like I don't know, especially if directly asked. Or you just politely say thank you and that's it. They gave us some reading materials , but they don't have a library. Thank you so much

Lee: we are in North Dakota , the cancer center here is overwhelmed , hell this whole state is , currently we use the hospital , but a lot of the staff/Dr's are shared. They have not mentioned the pump , it kinda sounds a lot like my pain pump. I will definitely bring that up. I don't think they have mentioned a foundation test. It seemed like things went crazy once they found out it was stage 4, which is understandable especially with her age. Chronic is fine , we are used to that.

Thank you all for the help and support. Dr. Google might be an uneducated fool , but it did help me find this place that is full of amazing people.

Sorry for such a long post , I didn't know if I should split it up

Lee
Posts: 6165
Joined: Sun Apr 16, 2006 4:09 pm

Re: My fiance , 33, gets Stage 4 diagnosis...

Postby Lee » Wed Nov 11, 2020 6:00 pm

DO NOT feel bad about writing a long post. We get it here what you are going through especially at this moment in time, this is a crash course in medicine. We have your back here. Most people here are patients, butt many of the people here are care giver, and they have walked in your shoes. Feel free to vent here anytime.

Some advice I am about to give you, never take surgical advice from an oncologist, AND never take oncologist advice from a surgeon. 2 different areas in medicine. Butt there are a few surgical oncologist out there.

Not all doctors graduate at the top of there class AND not all doctors keep up with newest procedures when dealing with cancer. That is why getting 2nd opinions at major cancer centers is such a good idea. Some doctors may not be keen on the HAI pump, butt Dr. Kemey at Sloan Kittering Memorial in NYC is probably the top doctor when dealing with the HAI pump. When some patients here have been told there was nothing they could, Dr. Kemey put that patient in NEDville. There is also other doctors in other areas, I'm just not sure where they are.

If you are interested in looking into HAI Pump, start a new thread asking opinions on it.

The Foundation One is fairly new. You will see commercial on it on TV now. I remember the first commercial my husband saw one, I started talking about it, DH about dropped his jaw, how do you know this, I smiled, HERE!!! There is wealth of information here, ask away.

Same with Keytruda, some people were on it here before the FDA approved it for colon cancer. That is why certain testing is so important. Believe me, most testing they do on the tumor today was not available back in 2004. FOLFOX was an experimental drug back in 2004, only available for stage IV, had not been approved by the FDA yet. My Onc got me on board with a trial, I was her only patient for several months.

Know in your heart, she can beat this.

Lee

P.S. This might be a good thread to learn some of the lengo. It is a sticky at the upper half on this page. The first page & last page on that thread probably have the most info.

viewtopic.php?f=1&t=5366

P.S.S. As for your personal life, WOW :shock: Something tells me if you wanted to climb Mt Everest today, you would probably do it
rectal cancer - April 2004
46 yrs old at diagnoses
stage III C - 6/13 lymph positive
radiation - 6 weeks
surgery - August 2004/hernia repair 2014
permanent colostomy
chemo - FOLFOX
NED - 16 years and counting!

StrongEnough
Posts: 12
Joined: Tue Nov 10, 2020 9:15 pm

Re: My fiance , 33, gets Stage 4 diagnosis...

Postby StrongEnough » Thu Nov 12, 2020 9:13 am

Thank you Lee. All this terminology is overwhelming in itself. I will definitely take your advice. I started this to be able to better help her , but it helped me as well. I will look into that pump for sure. Never even heard of Keytruda or a foundation test until you mentioned it so I will look into those as well. It literally felt like "ok she has stage 4, we need to do this and that and the other thing". It was so much info and couple that with being scared and it became just going through the motions. It was/is so confusing. It doesn't help with Covid either , it just seems so by hectic and almost as though there isn't enough time to talk and figure it out. Maybe that's just me. Thank you for the link as well.

It also helps to see so many survivors

Thank you. You mentioning MT Everest is actually what I believe this all is. A mountain I need to climb. To help her find her footing and lift her up. It's crazy , I found more help and peace through here than anywhere else so thank you all.

boxhill
Posts: 641
Joined: Fri Apr 06, 2018 11:40 am

Re: My fiance , 33, gets Stage 4 diagnosis...

Postby boxhill » Thu Nov 12, 2020 8:23 pm

Here's the deal with Stage 4: if, by some stroke of luck, she is what is known as dMMR or MSI--I could explain what those mean, but you should just google the terms and find some explanations you can understand--then she should NOT waste time with chemo, but go directly to immunotherapy, which means either Keytruda or Opdivo+Yervoy. I am using brand names here, rather than chemical names. Unfortunately, only a small percentage of tumors are MSI. Simply put, MSI cancers mutate freely, and their abnormality means that they are comparatively easy for the immune system to find.

I am assuming that the doctors you are dealing with are sufficiently well-informed that they would have put her on immunotherapy if her tumor was MSI. To determine that she would have had to have a biopsy. It is not necessary that she have extensive genetic testing like Foundation One to determine this: it is one of the basic tests that should be done on any tumor. That said, a competent oncologist will in this day and age refer ANY stage 3 or 4 cancer at least for more extensive genetic testing.

So, where is her primary colon tumor, have any of her tumors been biopsied, and what were the results? What chemo regimen is she on?

You are clearly an extraordinary person. What you have personally been through and accomplished is remarkable.
F, 64 at DX CRC Stage IV
3/17/18 blockage, r hemi
11 of 25 nodes,5 mesentery nodes
5mm liver met out
pT3 pN2b pM1
BRAF wild, KRAS G12D
dMMR, MSI-H
5/18 FOLFOX
7/18 and 11/18 CT NED
12/18 MRI 5mm liver mass, 2 lymph nodes in porta hepatis
12/31/18 Keytruda
6/19 Multiphasic CT LNs normal, Liver stable
6/28/19 Pause Key, predisone for joint pain
7/31/19 Restart Key
9/19 CT stable
Pain: all fails but Celebrex
12/23/19 CT stable
5/19 MRI stable/NED
Stop Key
8/20 MRI NED

StrongEnough
Posts: 12
Joined: Tue Nov 10, 2020 9:15 pm

Re: My fiance , 33, gets Stage 4 diagnosis...

Postby StrongEnough » Fri Nov 13, 2020 2:06 pm

Yea she isn't MSI. They mentioned doing genetic testing, but they said it could wait. She did have some biopsies taken from her colon and liver. Her thyroid is scheduled for next Wednesday. Chemo is Thursday for 7 hours of FOLFOX. Her primary colon tumor is in the sigmoid section and attached to a lymph node. Basically it is right in the junction or curve of the colon and rectum . They said it was actually a pretty good spot.

I don't think I'm exceptional or special, but thank you All of you are so amazing and strong , I just hope I can be brave for her and provide what she needs. One thing I'm hoping I can figure out is finances. She is trying to work through all of this. Honestly that crushes me. I wish I could take that worry and stress away. We did sign up for help with the medical bills , in a few weeks we are already over $70,000. Not sure where we are with insurance (so backed up.) As for actual income and other bills , I really don't know what to do. She feels bad about all of this and putting us into debt and I just try and calm her down and say we are fine (I do the bills). She knows though and i don't want to worry her, but I also don't want to flat out lie. I told her it's worth it though. We need to try at all costs and no matter what happens , it's worth it.

Lee
Posts: 6165
Joined: Sun Apr 16, 2006 4:09 pm

Re: My fiance , 33, gets Stage 4 diagnosis...

Postby Lee » Fri Nov 13, 2020 6:58 pm

Something that might help with chemo. A day or two prior to infusion, drink a TON of liquid, water. She will lose it within a few days of infusion. I used to stop by BurgerKing & picked up an egg, cheese breakfast sandwich on way to infusion. I found food in stomach kept nausea at bay. So with that, I am also going to say, eat small meals through the day vs 3 meals a day. AND junk food is better than no food (trying to eat healthy & not wanting it). With FOLFOX, she will gradually loose her taste buds (it will come back in time). Was never a big potato chip eater, butt towards the end, all I could really taste was salt. Chips, etc, junk food because I could taste something.

Lee
rectal cancer - April 2004
46 yrs old at diagnoses
stage III C - 6/13 lymph positive
radiation - 6 weeks
surgery - August 2004/hernia repair 2014
permanent colostomy
chemo - FOLFOX
NED - 16 years and counting!

Lee
Posts: 6165
Joined: Sun Apr 16, 2006 4:09 pm

Re: My fiance , 33, gets Stage 4 diagnosis...

Postby Lee » Fri Nov 13, 2020 7:09 pm

StrongEnough wrote: . . . . She is trying to work through all of this. Honestly that crushes me. We need to try at all costs and no matter what happens . . .


Look into Social Security Disability. Since she is a stage 4, she should qualify. Again you may want to start a new thread on that subject. Some people in the past had to hire a lawyer to get approved.

FOLFOX is accumulative, it will hit her harder over time. Hopefully other will give there input regarding getting Social Security Disability. Thus reason for new thread.

Good luck,

Lee
rectal cancer - April 2004
46 yrs old at diagnoses
stage III C - 6/13 lymph positive
radiation - 6 weeks
surgery - August 2004/hernia repair 2014
permanent colostomy
chemo - FOLFOX
NED - 16 years and counting!


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