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Mom Stage IV.

MadeInMichigan
Posts: 35
Joined: Nov 2012

I posted here before, and she may even read this post (she saw my other one. Eesh.)

Anyway, I'll try to keep this short, and I know a lot of things vary and anything could happen, but I figured I'd be best to ask people who have experienced some of this. My mom was diagnosed about two and a half years ago with stage IV and a spot on her liver and some lymph nodes. They removed it, and got her on chemo. Fast forward to yesterday, she found out that a CT scan shows three spots on her liver, and a mass near her pelvic bone after being told her numbers doubled in two months.. obviously, worst-case scenario. She'll be given new chemo, since the old stuff seems to not be working.

I guess my first question is how many sorts of chemo options are out there? Her side effects aren't bad besides dry skin and being fatigued. The doctor said he'd save radiation for a last resort.

Secondly, why is it that they can't perform surgery when there's more than one tumor?

Thanks a lot everybody. I don't post here often, but I do read, and there are some remarkable stories here. Hopefully soon, a cure will be found.

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geotina
Posts: 2053
Joined: Oct 2009

There are a few chemo combos available.   In order to have surgery, you need to be off chemo for a few weeks and mainly off Avastin.  If there are tumors in a few areas, those could continue to grow while waiting for the surgery so generally, they want to shrink things as much as possible before even considering surgery.  If the tumors were just in her liver, then she may be a candidate for a liver resection, they can do this if there is more than one tumor but since she has tumors in other areas, that complicates things.

What kind of surgery has your mom had in the past and has she been on continuous chemo?  If so, what type of chemo.   You indicate there is a mass near her pelvic bone, do you know where and is it a bone metastases?   A little more info could generate some further responses.   

I am also in Michigan, where is your mom being treated?  If you don't want to post it send me a pm in the event you want to get a second opinion as to how to proceed forward.

Take care - Tina

 

MadeInMichigan
Posts: 35
Joined: Nov 2012

Thank you for the response.

Unfortunately, I don't know some of these questions, but I can answwer some of them accurately. First, she had surgery about ten years ago to remove what I think was stage I cancer, and went into remission after briefly having a colostomy bag (she soon had it removed). She didn't require chemo. A few years ago she got blood work that said her numbers were up. She had two cancer related surgeries (one to remove her appendix and some of her colon, and then to get a spot off of her liver). She has had chemo weekly for... quite awhile. I know that's vague. I want to say it's probably been at least 6 months of continuous chemo currently. Now, for me to get incredibly unhelpful -- I don't know what specific kind of chemo she gets, other than that she gets it through a port.

As for the mass near her pelvic bone, I'm not 100% certain because I didn't ask, but she didn't make it sound like it had gone to her bone. I'll ask tonight.

I believe she's been getting her treatments in Eastpointe.

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traci43
Posts: 423
Joined: Jul 2007

Sometimes they want to do chemo first to reduce the tumor load.  Also whether it is a bone met or peritoneal met there are different surgical options for those types of mets compared to liver mets.  These surgical options may require different expertise and different doctors.  Hope all goes well.  Keep us posted.

MadeInMichigan
Posts: 35
Joined: Nov 2012

She's still vague as to what it is/where it's at. She said "mass on pelvic area" and "mass near pelvic area" both by her cyst, which makes me think it's not the bone -- which would be a good thing, I'd think. I'll update with whatever goes on. 

EDIT: Also has a spot on her colon again as well, which I forgot she said. She also repeated that they said they won't do surgery. I thought they'd do it if things shrunk enough, but apparently not. Can just hope that the chemo works for awhile, I guess.

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geotina
Posts: 2053
Joined: Oct 2009

Don't get down about not getting surgery.  You never know what may happen down the road.  Most on the board are not candidates either.  Since your Mom is vague with her answers perhaps she is not getting/understanding everything the docs say.  This is so very common.  They speak cancer talk. Anyway, next time your mom has a doctor's appointment make sure someone is with her with all your questions written down.  I did this all the time.  Everytime I thought of something I would write it down and when George went to the doc they ask the usual stuff and then are ready to leave the room and ask any questions.  George would always say no and I would say oh, not so fast, and bring up all my questions. 

Chemo can work for a very long while.   When my George was diagnosed in 3/09, he was very advanced Stage IV.  Should have had six months or so and guess what, he got 3 1/2 years and most of that time was pretty good, he felt good, worked full time and we even took vacations like to Vegas.  Some days Mom will feel better than others, it is the nature of the beast. 

Also, it is good to know exactly what chemo treatments she is getting.  Some can be a little rough and if you know what to expect, you can be prepared for her needs and know what is a normal reaction and what is not.  Someone going to treatment/doc appointments with her can nail this stuff down. 

Take care - Tina in Livonia, MI

 

 

 

MadeInMichigan
Posts: 35
Joined: Nov 2012

Thank you for the information. I'll be asking her what her next treatment will be, whenever it starts back up again (should be a week or two).

EDIT: Additionally, I've read up about SIR-Spheres and Dendritic Cell (DC) therapy. Maybe it's a stupid question, but are these sorts of things new enough that they wouldn't be available in Michigan? I always just get the impression that the breakthrough drugs are scarce and only in certain regions.

Chelsea71
Posts: 1170
Joined: Sep 2012

SIR spheres should be a form of treatment that's available in your area, but DC therapy may be tricky.

MadeInMichigan
Posts: 35
Joined: Nov 2012

I noticed SIR-Spheres are only an option if there are only unresectable spots on the liver. Well, that bums me out. Step by step.

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annalexandria
Posts: 2193
Joined: Oct 2011

I'm sure sorry you and your family have to go through this.  It's a hard road to walk.  Hopefully we can help you out a little bit.

Has your mom had a 2nd opinion yet?  For more complicated cases, it can be helpful to get another set of eyes on the case.  It can be worth traveling to a major cancer center (if you're not there already) to see what they say.

As for not doing surgery, I think one of the issues is the fact that the cancer has already spread.  Because the cancer is now systemic, the general feeling is that the treatment should be systemic as well.

But I'm curious about this...did your mom have any spread to the lymphs?  I could be wrong about this (and hopefully someone will correct me if I am), but my understanding of how colon cancer spreads to the liver is via the blood (there's a big artery/vein that leads from the colon to the liver...not sure which it is).  So it seems like a big surgery might still make sense...get the liver tumors out, resect the colon again, and the mass in the pelvis (if it's in the soft tissue, and not the bone), and if it's not in the lymphatic system, you might be able to get on top of it.  Especially is you add cimetidine to the mix prior to surgery, in hopes of reducing the chance of further spread through surgery.   Your mom would have to be in fairly good health for a surgery like this, but if you find the right doctor, it could offer something more to try.

This is why I would want another opinion, especially from a surgeon who specializes in colo-rectal surgery.  And this would also all depend on whether or not your mom wants to take this path.  I've had five big surgeries, and it's not much fun.  But if it buys more time, maybe a lot more time, it might be worth considering.

Keep us posted on she's doing (and how you are doing too).

Hugs to you both~AA

Cammie88
Posts: 19
Joined: Sep 2013

So let me begin by saying I am terrified.  My mom is my best friend and I am afraid to lose her.  I brought her to the hospital on Friday morning after about 6-8 weeks of off and on vomiting & diarrhea.  After an abdominal CT we were told she had a small bowel obstruction and a small cystic lesion in the pelvic area.  After an NG tube to clear the blockage they decided to do a colonoscopy on Monday.  Turns out to be a tumor causing the blockage and a diagnosis of colon cancer.  Today, surgery to remove the colon tumor and the cystic lesion.  Alone when the doctors came in, I was devistated to learn of 2 colon tumors and the cystic lesion being mets to the ovary.  By the way, the metastatic tumor was the size of a soccer ball and the 2 colon tumors not small (no report on size).  It was confirmed she will need chemo.  Help please, I need some encouraging words and what to expect from post-op day #0.  Thanks

 

 

so sorry didnt know how to create a new topic, but hopefully we can help each other

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annalexandria
Posts: 2193
Joined: Oct 2011

on left hand side of the screen, right below where it says Colorectal Cancer, you can click on "post new forum topic".  You will get a lot more response if you cut and paste this post in that way.  Welcome to the forum!

MadeInMichigan
Posts: 35
Joined: Nov 2012

I've suggested she get a second opinion or try some of the newer treatments, and all she says is "I trust my doctor." ... it's frustrating, but what can I do? She's said she'd "try anything" to last as long as possible, but evidently that's not even true. There's nothing that I can do except ask/suggest things, but it doesn't seem to do anything or matter. I feel like somebody in her situation would AUTOMATICALLY get a second opinion. I know I would. I could understand not wanting to fly all over the country for treatment, but I'm not even asking her to do that. 

Trubrit's picture
Trubrit
Posts: 1396
Joined: Jan 2013

well not always, but I think it wouild be good for her not to push her too hard to get that second opinion.  At the end of the day it is her cancer and her body.  If she feels good about her Doctor, that is a fine. 

Share some of the posts from this forum, so that she can see what options are there for her. 

I didn't get a second opinion. I went with my gut, and my gut told me that my Oncologist was doing right by me. Time will tell, but I had to go with how I felt at my appointments. 

My thoughts are with you both. 

Blessings!

MadeInMichigan
Posts: 35
Joined: Nov 2012

She says a second opinion is pointless because "there's nothing they can do." I've read about people getting several tumors removed at once during surgery (from different organs), but she said they can't do that. Even if the new chemo works and the tumors shrink, surgery's apparently not an option. I'm just struggling to realize that it's already been 2.5 years, and very few people make it 5+ years. It all just becomes a sudden realization for me at once, and there's only one obvious conclusion: This sucks. I'm just frustrated. I can't imagine how she feels, at all.

Again, I'll keep updated.

EDIT: I forgot to say, no... I don't think lymph nodes are involved, at least she never said they were to me.

annalexandria's picture
annalexandria
Posts: 2193
Joined: Oct 2011

there's only so much you can do.  Is there anyone else in the family who might be able to talk to your mom about your concerns, maybe someone who is not the "kid"?  I know myself as a mom that I might not be as likely to listen to advice from one of my children, compared to someone like a sibling, spouse, or good friend.

But ultimately, it is going to be up to her to make the call.  She should hear your feelings about her choices, but she's the one who has to go through the procedures (if she can find a doc who will do it).  I imagine after 2+ years, she's feeling very worn out and down about facing more cancer.  It's a hard place to be mentally and physically.

I'm really sorry you and your mom are going through this.  It's an awful experience, sometimes I think more so for the caregiver than the patient.

MadeInMichigan
Posts: 35
Joined: Nov 2012

That's a good point about having someone else suggest things... on the plus side, she started her new chemo today, and she said she'll basically be getting a "fanny pack" of sorts that she wears around for 48 hours. A couple days later she goes in, and they take it off. If this stuff proves to not work when she gets her next slew of tests, I'll be asking my grandma or somebody to suggest a second opinion or some other methods.

UncleBuddy
Posts: 570
Joined: Aug 2013

I'm not sure how old your mom is, but I know my dad is from a generation where they look at doctors as knowing all. It's hard for a parent to sometimes take direction from a child because they feel they know better because of their life experience. I had a situation with my dad where he and my brother went to a family doctor who gave them their annual physicals by giving them a rudimentary exam. They didn't give an EKG or a rectal exam. Dad is in his 80s and kind of set in his ways. I just kept telling him how I loved him and cared about him, but I felt that his doctor wasn't giving a thorough exam. I told him that it would make me feel better if he went to a new doctor. Just give it a chance and see if you like the new doctor. My dad was more worried about hurting his doctor's feelings than he was about himself. After several discussion about how this would make me happy and ease my mind, my dad agreed. He and my brother went to a new doctor who gave him and my brother thorough exams. This doctor found my brother's rectal cancer. If I wasn't persistent, I don't think my brother would be here now because his doctor never would have given him a rectal exam. So if your gut is telling you that they need a 2nd opinion, expalin to your mom how this is worrying you and it would make you feel better if she just got it checked by someone new. Ask other relatives who are older to step in and help. I know it's her life and her choice, but I feel that a 2nd opinion is no big deal but could end up meaning a great deal. Good luck!

Lin

PS My brother used that fanny pack too.It made it so much easier for him. His only complaint was that it annoyed him when he slept, but it was worth not having to spend so much time in the infusion deprtment getting chemo.

MadeInMichigan
Posts: 35
Joined: Nov 2012

Hopefully he didn't decide to smoke. My mom started smoking when she found out she was stage IV. (More reason I suggest she's given up when she says "NO I'M NOT!")

MadeInMichigan
Posts: 35
Joined: Nov 2012

My mom told me today that the mass "near" her pelvic bone is actually on it. That really kind of killed my hopes. Thinking "Alright, at least it's not in the bone.", but it is. Of course, I had to read that once cancer spreads to the bone, prognosis is lucky to be a year. She's already lasted longer than they anticipated, so who knows. Still not exactly what I wanted to hear... especially given the rarity of colon cancer spreading to the bone.

Trubrit's picture
Trubrit
Posts: 1396
Joined: Jan 2013

I'm so sorry for your mum and for you. Its definitely not news anyone likes to hear. 

May you both have the strength to travel this journey and try to keep your head above water and enjoy your times together. 

Blessings.

MadeInMichigan
Posts: 35
Joined: Nov 2012

Just an update. She told me today that she was having an allergic reaction to the chemo she's getting... not sure of the name, but it's one she said she's had for quite awhile.

MadeInMichigan
Posts: 35
Joined: Nov 2012

and also a question. Last week my mom had a fever of about 101 or 102 that went away after a day. Last night she had a fever of 103, and now it's 102. Is this typical?

Lovekitties's picture
Lovekitties
Posts: 2926
Joined: Jan 2010

Please have her or someone on her behalf call the oncologist ASAP.  A fever is not something which should go unreported. 

Marie who loves kitties

MadeInMichigan
Posts: 35
Joined: Nov 2012

She's going to urgent care. She's pretty sure (and it looks like it is) that she has cellulitis on one of her legs. To top everything off, she's a diabetic. Hopefully they keep her overnight.

Trubrit's picture
Trubrit
Posts: 1396
Joined: Jan 2013

I'll be thinking of your mum and hoping that they get everything sorted. 

Blessings.

UncleBuddy
Posts: 570
Joined: Aug 2013

you were able to convince her to go to urgent cRE. My brother's doctor told me if he had any fever, rush him to the hospital. With his last bout of chemo in 2012, he had a fever and it ended up being a blood clot. They put him on blood thinners and kept and eye on it and all went well after that. A fever is not something to fool around with. I wish your mom well.

MadeInMichigan
Posts: 35
Joined: Nov 2012

I appreciate it. I feel like I act inappropriately given the severity of what she's going through. It's like I've just been in shock for the past few years for the most part. I know seemingly minor problems can become huge ones in people who are on chemo, OR diabetic. Having her be both has me worried, but I'm hopeful.

UncleBuddy
Posts: 570
Joined: Aug 2013

We can only do as much as they allow us. It sounds like you're doing the best you can to help your mom. It is tough being a caregiver, or a relative, especially if you don't live nearby. Fevers can always be dangerous for chemo patients, so it's important for your mom to stay on top of that. My brother was hospitalized several times for fevers during chemo. It ended up being a clot behind his port, so they had to put him on blood thinners. Now that his cancer is back, the port is in and chemo is restarted, he is on baby aspirin as a blood thinner. We'll see if this works for him. Cancer sucks! I wish you and your family well. Make sure you take care of yourself too. Caregivers tend to worry so much about the cancer patient and put off their own health. Make sure you're getting your own check ups and eating well. :)

Phil64's picture
Phil64
Posts: 431
Joined: Apr 2012

I read your post. I also live in Michigan. I started by going to Battle Creek MI cancer center. Later switched to U of Michigan Health System (UMHS). From my perspective there is a huge difference in expertise. Wishing you the best!

MadeInMichigan
Posts: 35
Joined: Nov 2012

She got out after a couple days. Had a few bags of antibiotic, and now has to take pills for awhile until it completely clears up. As for the second opinion, I've asked her about that, and she won't do it. She basically says "They won't be able to do anything different for me, they'd use the same drugs." and "I like my doctor.", so that's that.

MadeInMichigan
Posts: 35
Joined: Nov 2012

It's been about three months, and the numbers just keep creeping up and up. Seems like it will really only get worse and not any better at this point. I obviously try to stay positive, but yeah. She missed the phone call today and her doctor wouldn't say the numbers over the phone (for whatever reason), which is only a bad sign, considering he's left messages before.

It's just frustrating. It's also still ridiculous to me that it's already been nearly three years -- I have no idea how, and I wish it wouldn't.

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lp1964
Posts: 852
Joined: Jun 2013

What can one say in situations like this. I'm sorry you have to go through this. Just do one day at a time, because thinking in any bigger than that gets overwhelming. We always have control over one day, to fill it with good things and tolerate its trials.

I wish you the strength to carry on.

Laz

MadeInMichigan
Posts: 35
Joined: Nov 2012

She was told today that her numbers have gone from 165 to about 340... in a month. I'd try to find a positive to that, but there isn't one. Doctor's ordered a PET scan for next week.

UncleBuddy
Posts: 570
Joined: Aug 2013

With stage 4 cancer, you have to take it one day at a time. You sound frantic, just like I was, when i found out that my 49 year old brother has stage 4 cancer. All I saw were the statistics. Then I read so many posts on this board where stage 4 patients were still around 5+ years later. My brother keeps telling me that he's not going anywhere. He almost died this past week and I believe he has an iron strong will to live. His family doctor told me not to count him out, that he is a fighter and he just may fool us all. Who knows? All I know is that I cherish everyday that he is with us. Once he is able to travel, I am going to take him on a trip. Take some time to spend with your mom. Talk to her. I know things may look grim right now, but she is still here. Try to enjoy whatever time she has. As caregivers, it is so hard to watch our loved ones get so sick and we worry so very much. You will not do your mom any good if you get sick. Please take care of yourself.

Lin

MadeInMichigan
Posts: 35
Joined: Nov 2012

I appreciate the response. It's just hard, obviously, and only compounded by the fact that my cat was put down this morning. It's a damn good thing I'm not suicidal, but I feel like I got hit by a truck anyway.

Her PT scan will be in a few days. I'll post the results here, though I know what to expect, I think. Sorry for sounding so whiny by the way.

Trubrit's picture
Trubrit
Posts: 1396
Joined: Jan 2013

We're here to listen to all of your concerns. Don't think of it a whining, if you need to vent, we're here to listen.

I'm so sorry to hear that your cat passed away. Animals can be such a comfort. 

Keep your chin up, we'll help you through. 

MadeInMichigan
Posts: 35
Joined: Nov 2012

I am envious of the strength of all of you here. My mom. Anybody going through what so many people on this forum are going through. I don't know how you do it.

Instead of scientists going back and forth with all the useless studies I see at least once a day in articles, more effort needs to be made on things that actually matter -- like "the 'C' word."

MadeInMichigan
Posts: 35
Joined: Nov 2012

Been awhile. Just a little update:

Just going along. She's stressing out because of really dry skin on her face. She had cellulitis for the second time in two months on her leg. On and off back pelvic pain from a tumor back there. Obviously hopes her numbers will go down with her next test, but hasn't had much chemo the past two weeks due to the cellulitis and the holidays. She's been sleeping a lot more.

MadeInMichigan
Posts: 35
Joined: Nov 2012

Her numbers went down, but I heard her talking on the phone and apparently her doctor told her (but she didn't tell me) she has about 6mo/1yr left if she's lucky. I know to go day-by-day, but it's already been 6 months since I made this thread. Time goes by a bit too fast.

teamzach's picture
teamzach
Posts: 35
Joined: Jan 2014

I know this seems silly, but see where your mom would like to go. My husband and I went to disneyland 5 months before he passed. The memories we made were amazing. His laughter, well.. I still remember it like it was yesterday. Praying for you and your sweet mom. I am so sorry you have to deal with this stupid disease. It is just not fair.

Janelle

fatbob2010's picture
fatbob2010
Posts: 384
Joined: May 2012

So sorry to hear this, has to be hard for you.  Yes, time does seem to go too fast.  Not only hard for you, but also can be unbearable for your Mom.  I hope that you can find comfort in the time you have with her.  Comfort and peace to all of you.  Art

MadeInMichigan
Posts: 35
Joined: Nov 2012

Thank you.

Just thought I'd also say that she's started to skip chemo on some days, and she doesn't reschedule when she does. Today was supposed to be her long day (four hours) and she decided not to go. It also seems like she complains about pain more often now, and also sleeps more.

Maybe she'll reschedule today's since it was four hours. Anyone else skipped an appointment?

annalexandria's picture
annalexandria
Posts: 2193
Joined: Oct 2011

Thanks for coming back to update us.  I would say that skipping an appointment at this stage of things is not surprising.  In fact, given that your mom's condition is apparently terminal (and I'm just so sorry to hear that), it may be time for your family to have an open discussion about what's going on.  This will be very hard to do (depending on a family's approach to communication, maybe impossible), but if the chemo is not working, as the rise in CEA suggests, is there a reason for your mom to continue on a debilitating chemo regimen?

Has your mom had any scans lately to see what's going on?  Has there been any discussion of hospice being involved at this point?  Hospice tends to be really good at pain management, and it sounds like your mom needs that now.  And it doesn't mean that death is imminent, just that there is no longer expectation for a cure.

I hope I'm not being too direct here, but I imagine you want whatever time is left for your mom to be as comfortable as possible.  Talking directly about some of these issues with other people in the family may help you to have a better understanding of why things are being done, and what to expect.

I've gone through this with my sister, and it's a terrible experience. Big hugs coming your way. 

MadeInMichigan
Posts: 35
Joined: Nov 2012

Another update -- more pain to the point of tears. Constant. She was just at the doctor today and he prescribed a new pain killer since Vicodin isn't working.

As far as I know for a scan, I think she's either getting one later this month, or next month for sure. It's been a big bummer because it's like she sleeps until late in the afternoon, wakes up, goes to her aunt's house to smoke (since she can smoke inside there), comes home at midnight or later, and repeats. She's almost never home. I'm not sure she even needs another scan to know what's going on though.

I'll post again soon. It's sad that it's at the point now where she's not home so often that it almost feels like she's already gone.

teamzach's picture
teamzach
Posts: 35
Joined: Jan 2014

It may be time for hospice. The nice thing is that they not only help with managing pain, but they have an amazing group of people who can just be there to listen to her...or to you. They can explain as little or as much as you would like. Just be there for her in whatever manner she needs.

Blessings,

Janelle

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