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Mother with stage IV colon cancer, now in the liver and lungs too

Akroger's picture
Akroger
Posts: 67
Joined: Mar 2013

Hi everyone,

This is my first time posting on these boards, and I hope that someone will have some insight that can help me, because so far searching via Google has proven less than enlightening. My mom was diagnosed with colon cancer at the end of January, and two weeks later her doctors determined that it was stage IV, and that it had metastasized to her lungs and liver too, particularly the liver. They promptly started her on a regimen of chemotherapy and radiation treatments, both of which she has recently stopped. They're going to be evaluating her body's response next week to see if they should continue with either or both treatments. 

I am really worried because aside from the side effects, my mom has seen no improvement from the treatments, she's in as much pain as ever, and still has the typical late stage colon cancer symptoms (pain, bleeding, diarrhea, etc.) She can barely even eat anything, maybe half a banana a day, although she's at least been good about drinking lots of water. I'm not sure what to expect anymore - when first diagnosed, the doctors gave her two years, then after she stopped radiation this week, they said probably more like one, and yesterday my dad was so freaked out by her deteriorating condition that he was afraid it could be a matter of weeks. The big problem for me is that I don't even live in the same state as my parents right now, and while I try to visit almost every week, it's hard to understand exactly what the status of everything is. Does it take a week or two following the cessation of chemo and radiation for the positive effects to really show, or should those have started to become apparent already? What signs would there indicating that my mom is close to the end? I have planned to move to be close to my parents at the end of April - might that be too late?

I apologize for the detailed, difficult nature of my questions - I realize that it's difficult to judge a case without being directly familiar with it, and I'm not expecting accurate predictions or answers. Even my mom's own doctors don't have a precise prognosis, because it's hard to predict how these things can develop until further testing and evaluation. Still, if anyone has any thoughts or insights, if anyone can tell me what critical signs to be looking out for, if anyone can tell me what symptoms are the ones to really worry about and which ones are less serious than they seem, I would be extremely grateful. Thank you all for taking the time to read this.

Very sincerely yours,

An already grief-stricken adult daughter of a cancer patient

PatchAdams
Posts: 272
Joined: Nov 2011

Akroger,  I'm so sorry for your mother's news.

First, Chemo doesn't cure cancer.  If your mother had radiation, it sounds like she has rectal cancer. Is that correct?  Radiation is generally used to try and shrink the rectal tumor so surgery might be possible.  If she saw no relief during treatment, I seriously doubt she'll see any change over the next few weeks.  

First line of treatment in most CRC is surgery because surgery can be with curative intent.  If Mom's liver involvement was extensive, they'd attempt to shrink the tumors with chemo and then hope to follow up with a liver resection.  

Your mother sounds very, very ill. The fact that she's unable to eat makes me wonder if she has blockage.  I'd have your father question the doctor about that or take her to the ER for evaluation and IV.

If your mother is in pain, it's not too early to call hospice. They no longer just help with end of life.  They offer pain relief and help with quality of life.  Please do a websearch for hospice in your parent's town and be prepared to suggest someone who can come in and help mom during this time.  There is no need for her to be in pain! 

It does sound like your mother is very ill and I'm so sorry for your news.  

AnnLouise's picture
AnnLouise
Posts: 276
Joined: Mar 2013

You have come to the right place for support, information, and personal experience. I have stage IV colon cancer with mets to liver(gone for now) and lungs. I have been through chemo, liver resection, SIRT, Rfa, and more chemo. I start radiation this week. i am doing well and enjoying life after 17 months. Just to let you know there is hope! Many people here have been through much more than I have and some are in remission. Do you know why they stopped treatment and how are they going to assess or evaluate her progress? I am sorry she is in such pain....are they helping her with that? Take step by step and keep a notebook with the information. Hopefully we can help you through your journey......thinking of you and your parents....~ Ann

Trubrit's picture
Trubrit
Posts: 1626
Joined: Jan 2013

You have come to the right place for advice, support, comfort and hope.

Those who post here are all over the board. Young (I think our youngest is 26), old, male, female, stage 2 through stage 4. Long time survivors and folks in the middle of chemo and radiattion. You really can't beat that.

I am so very sorry that your mother is suffereing so, and even more sorry that you are living in a different state.That must be so hard for you and your mum and dad. 

How old is your mum (You do not have to answer this if you don't want to).  

I think one of you should definitely be in touch with the Oncologist office about your mum's continued pain. I call my oncologist and talk to the nurses all of the time for one thing or another. They are so helpful and I have recieved much relief because of them. 

Keep in touch. We are all on board with your family now, and our love and support will help.

fatbob2010's picture
fatbob2010
Posts: 438
Joined: May 2012

Welcome.  This is the right place to come for support and suggestions.  The place that no one really want's to ever be.  Reading your initial post your concern and caring said a great deal about your family's solidarity.  Your mother and father are particularly fortunate to have a daughter like you.  Have you had a chance to talk to the Oncologist your self...that may be a good place to start.  Your father is real close to this and may not be seeing the situation clearly through the haze of his own presumptive grief and loss.    There is little about the history of the illness in your first posting. However, if the disease was just discovered in January of this year and there was no history of curative responses immediately put in place, I cannot help but feel that this is a case of late diagnosis.  There is no apparent reason for doubt that your mother does seem very ill and in chronic pain. Sadly, Patch may be right and it is time for a call to Hospice.  ((Hugs of Comfort))

Akroger's picture
Akroger
Posts: 67
Joined: Mar 2013

I can't express how grateful to everyone for your outpouring of support and your kind words and thoughts for my mother. The situation has gotten even worse today, from what my father has told me, which makes me think I could be taking a trip to see them tomorrow. The primary oncologist is currently on vacation, but I got the phone number for my mom's radiation oncologist, and will give him a call tomorrow to get more information. I am really worried becaue she is experiencing delayed vomiting and doesn't even want to drink water now. I'm not even sure what to tell my dad to do to handle that, he's at a loss for what else to do to help her, because he hasn't been able to get much helpful advice from the doctors.

My understanding is that the doctors will be doing an evaluation on my mom's response to the chemo and radiation about a week from now. However, given how negative her physical response has been so far, and the lack of relief, I am suspecting that they won't be doing additional rounds. My neighbor also had cancer and underwent different chemo treatments, so there's a chance that they might switch my mom's chemo treatment, but I have to admit ignorance on the details of the different kinds of chemo regimens. I am going to ask her doctor about that tomorrow too.

As far as the main cancer, the description made it sound like it was at the very end of her colon, so maybe it is more of a rectal tumor in terms of location. It's an 8x2cm tumor, so there is definitely blockage, and a lot of pain. Prescription painkillers bring little relief.

My mom is 57 years old. She has a long history of not taking care of herself, and of not listening to me when I've begged her to see doctors for symptoms and illnesses she's experienced in the past, and to just generally watch her health more carefully. I am heartbroken by all of this but not terribly surprised. I want to do everything I can, at this point, to try to prolong her life while making it as comfortable as possible, so if that means that a hospice would be the best option, I might need to start looking into that. We probably won't be able to make any decisions like this for sure until after the evaluations of her response to the different treatments.

Again, I can't express just enough how much everyone's messages have meant to me. I wish you all the best of luck and health in your own fights, and I truly ache for the suffering that everyone who has been directly affected by cancer like this must go through.

Trubrit's picture
Trubrit
Posts: 1626
Joined: Jan 2013

It sounds like she needs to be taken to the ER. She will get terribly dehydrated if she can't drink liquids and will need to get them via IV.

I am so sorry that such a young mother (yes, 57 is young) is experiencing such a hard time.  And you're poor dad, he must be beside himself. 

I will pray for your mum, dad and you and hope that relief will come to your mum, and you and dad can handle the stress of your mother's pain. 

 

AnnLouise's picture
AnnLouise
Posts: 276
Joined: Mar 2013

didnt mean to repeat your advice...My son came home hungry in the middle of my post so I didn't read yours before I posted... ~ Ann

Trubrit's picture
Trubrit
Posts: 1626
Joined: Jan 2013

I say that its just back up, and not wasted info at all. 

renw's picture
renw
Posts: 282
Joined: Jan 2013

I don't know if this helps, but five months ago I had extreme pains in my liver. It was very swollen due to extensive liver mets. It was pushing on my lungs and it was very painful to even breathe. I was not even able to talk. I was also suffering from cachexia and losing 1kg every 2 days.

Instead of staying in bed I hit the gym 5x a week and hired a personal trainer. It was very painful, but I found that after each training session I felt a little better for the rest of the day. Within a few weeks, my liver swelling went away and was pain free. I also stopped losing weight. This may not be for everyone, but I believe keeping active is very important. Even if that means just going for walks.

I also did not want to eat and felt sick all the time, but I forced myself. I ate a lot of bananas as well in between meals.

If there is a blockage in the colon, this needs to be looked at first and a second opinion and possibly a colonoscopy would be the way to go.

AnnLouise's picture
AnnLouise
Posts: 276
Joined: Mar 2013

Is something you have to be aware of....if she is not drinking she probalby needs an IV of fluids. She could go to the ER or call her doctors and the infusion center could do it. I got dehydrated a few times last year and needed to go in for fluids. Once I got dizzy, grabbed a piece off furniture.....ended up under the furniture, unconscious , with a gash on my head worth 8 staples! Sorry for rambling but it is so important have fluids.

If you can't get a hold of the doctor tomorrow, be sure to ask for a PA or a nurse and they will talk to the doctor about your concerns. Be sure to express the urgency of the hydration and the pain. Keep a notebook because you think you will remember but there is so much information.

Your parents are lucky to have you.....let us know what you find out!  ~ Ann

 

 

Vancouver
Posts: 16
Joined: Mar 2013

Hi there,

My mom faced a similar diagnosis in Sept 2012--stage IV colon cancer that had metastasized to her liver.  She immediately had surgery and removed part of the colon and 18 lymph nodes, but her liver was considered unresectable.  She had to wait 8 weeks after the surgery before starting chemo, which it was hoped would help with the cancer in the liver.  During those 8 weeks, her condition sounds scarily similar to your mom's.  She went going downhill fast. Her oncologist and naturopathic oncologist both said that the symptoms she was experiencing (extreme fatigue, food aversions, rapid weight loss, lack of appetite) were common symptoms related to the cancer in the liver. 

When she was finally able to begin chemo (and it was questionable whether they were going to allow her to try as she was so sick and weak by that point), she was put on xeloda, an oral chemo with relatively mild side effects.  She was fortunate to have an amazing and immediate response--her cea dropped from 31 to 6 after two weeks on the medication (cea is now 1.3 after five rounds).  Within a week, the symptoms she had been experiencing began to resolve.  She suddenly had energy again and quite quickly was able to eat and put back on the weight she had loss.  She will be having her first CT scan since the original diagnosis on Tues and we will see how much improvement there really has been, but what I wanted you to know is that if your mom is able to find something that works to address the mets in her liver, she will probably start to feel much better.  Don't give up hope--I hope so much your mother will be able to have surgery and find a chemo that works for her.  

CT

 

devotion10's picture
devotion10
Posts: 642
Joined: Jan 2010

Your family is facing a great deal right now and I am sure your father is overwhelmed, but you must help him see the danger in your mother's situation as she has stopped intake of fluids.  Also she need not suffer from this pain. Keep us informed. Sending strength and courage your way. -- Cynthia  

Akroger's picture
Akroger
Posts: 67
Joined: Mar 2013

I apologize for the delay in getting back to you all, my mom finally had an appointment with her radiation oncologist today. She was reluctant to go at all, but my brother, who is there, the doctor and I made enough of a fuss that she finally listened. I'm afraid that her general resistance to things makes getting her the proper treatment a lot more difficult, and I may be going to visit for an extended stay to make sure that I can see some positive progress in her condition. 

Happily, the bloodwork generally showed positive results, with regard to  WBC, RBC platelet and potassium counts. Her liver function indications are also stable relative to the first test that she took, which is a huge relief. She has also started eating a bit more than she had been (which, since that was nothing, is still not a whole lot, but it's progress), she drinking water without a problem, and she's stopped the bleeding. So, all good signs.

 

Tomorrow she is going to see a palliative care specialist, as well as a doctor to evaluate her body's readiness to start the next regimen of chemo. It sounds like the painkillers are having pretty severe side effects, so I hope that they will make some changes to her narcotics regimens. She's still in a lot of pain, though she reports being in less pain than she had been before. But she's had some incoherence symptoms recently, and the radiation oncologist determined that movement in her gut was very slow, which he indicated was another painkiller side effect. Her bowel movements are also being affected a lot by the radiation, in that she is going to the bathroom more frequently than she should, and she's in a lot of pain due to the inflammation from the radiation. The doctor's recommendations were to try to get her bowel movements under control first, and he recommended that she take Imodium pills after each to help with that. He also expects that she will start to feel better from radiation side effects next week, which will be two weeks since she stopped the treatments. 

There have been a lot of scary moments recently, but it looks like we've entered a period of relative calm with her health for now. Together with the information that she gets from the two specialists tomorrow, I hope that things will just get better from here. I will be visiting next week, and I can report more directly on her condition as I see it then.

BTW, in response to previous questions, she is at the NYU Langone Medical Center, so we're pretty confident that she is getting high quality care. They're not recommending any kind of surgery at this point, I guess because of the stage to which the tumors have progressed. Renw, I wish I could recommend exercise and a physical regimen to my mom, and thank you for the advice, but the problem (part of what led her to where she is now) is that she has had a very sedentary lifestyle for quite a while. Her health was plagued by the related problems of obesity, depression and lack of movement. Which, I know, will make her prospects for fighting this a lot harder. At this point I think the most we can hope for is to try to make her as comfortable as we can, and to try to achieve that at home to the extent possible. My parents both immigrated to the US from Greece as adults, so they're still pretty traditional on stuff like that. After a certain point, of course, I realize that we won't be able to do enough for her anymore at home ourselves, and I am already planning to look into hospice options.

Thanks again for your continued concern for my mother and family. I feel like since I've joined this forum and started posting and corresponding with people here, it's given me a lot more information and strengthened my ability to be able to help my mom.

 

 

devotion10's picture
devotion10
Posts: 642
Joined: Jan 2010

and your family comfort and strength.  I do not know if your mother will get to the point of being able to have curative surgery, but I want to assure you that some are able to remain on palliative chemotherapy regimes for years as my husband has.  It is really good news that she is being seem by a palliative care specialist as this can help a great deal in providing her comfort both now and also if she reseumes treatment. -- Cynthia

 

A part of kindness consists in loving people more than they deserve.

 

 

 

Akroger's picture
Akroger
Posts: 67
Joined: Mar 2013

I went with my mom to the doctor today, and while she's still feeling pretty weak and is experiencing pain, her vitals seem to be in great shape. Her blood pressure is still good, her salt levels were all right, and the best part, a major drop in her CEA! From 2600 when she was diagnosed to 200 today! After she gets a cat-scan on Monday, if her liver tumors seem to be under control, there's a chance that she might get a colostomy because she still has a severe diarrhea problem, and because she's inflamed from the radiation, that's a big problem for many reasons. So that would signifiantly reduce the pain issues, I hope. She's eating better and agreeing to begin very light exercise now too. After last week's big scares, I'm just so indescribably relieved at these developments! Hoping for even better news from Monday's appointment! Smile

Sundanceh's picture
Sundanceh
Posts: 4312
Joined: Jun 2009

Hi AK

I wanted to point out that since your mom has completed radiation 2 weeks ago, that there is about a 4-5 week window when surgery could be scheduled.

Usually after radiation, there is a "cool-down" period of about 6-7 weeks to allow the inflammation to subside somewhat in the rectal area. 

This is a critical time, because if you operate too soon, there is a lot of internal damage that might make surgery more difficult...this is especially true for a rectal resection....if a colostomy were warranted, this reasoning may still hold true.

If you wait too long after 6-7 week window, then scar tissue and adhesions can also make things very difficult...

Years ago, that's where I was...I went in for a resection, but the margin was so close, they did not rule out a colostomy...my insides were flamed pretty good and there was alot of pain and swelling and inflammation still.

They were able to resect me by a couple of centimeters...they did not even give me a temporary ostomy...and it was a couple of years before my bowels could re-train themselves...and a couple of more behind that for things to settle down even further. 

Anyway, you might want to check into this with her onc and/or surgeon.

Best of luck and wishing you all well....it's a very tough story. 

Maxiecat's picture
Maxiecat
Posts: 524
Joined: Jul 2012

It sounds like your mom is moving in a positive direction.  Just keep asking those questions.

 

alex

Trubrit's picture
Trubrit
Posts: 1626
Joined: Jan 2013

and of course, the rest of the family. 

We all seem to react to our treeatments in different ways. I like it when I come across a person who sems to be experincing the same as I, and I hope that for you too, as its a great relief to know your mum's not alone. 

I hope you have continued good news. I hope that she gets her diarrhea under control before having to have colostomy surgery. 

I'm tryiny yo remember if you said your mum was stil in her 50's.  I know that I see older patients (late 70's 80's) who are so depleted by their treatments, that I've told my husband there has to come a time, when treatments are enough and its time to let nature take its course.  Sometimes family don't want to hear that, and the patient struggles on with no life beyond treatnets and side effects. In the end its your mother and father's call. 

I wish her all the best, and may you and your family find comfort in each other. 

Keep on keeping us informed. 

Akroger's picture
Akroger
Posts: 67
Joined: Mar 2013

And that's speaking for me. I can't even imagine what it is for my mother.

In spite of the good news, in spite of the hope that the cat scan will show improvements tomorrow, and that she will be able to get a colostomy soon to relieve her of her pain, for now my mom still suffers from severe, excruciating diarrhea. Thank goodness for disposable adult underwear because she's at the point now where she can't even control her bowels very often. But it hurts her so much. Any more painkillers and she'd be completely stoned, there's just not much that can be done until the colostomy now.

Every day, she cries out that she wants to die, that she wants God to take her away to end her pain. I beg her not to talk like that, to ask God only for good things, to make her well so that she no longer feels pain, and not to wish for death. Though not in the same physical agony as now, this is not the first time in my life that I have heard her say such things. I try to motivate her, to tell her the things she has to look forward to, to tell her that the colostomy will make everything better and that it's just a short week or so before she'll have that relief...what else can I say? What are the right things to say when a cancer patient has been in constant agony for 7 months, and can only wish that death would take her to end her suffering?

Trubrit's picture
Trubrit
Posts: 1626
Joined: Jan 2013

Dear, sweet daughter. How I weep for your pain and for your mother. I have been at hat point of asking for the Lord to take me, though it was not with cancer.  To watch someone you love, suffer so much pain, is hard to handle. 

I do so hope that you can take time aside for yourself. I know you want to sepnd every moment with your mother, but you need strength too. A small time, with soothing music, trying to calm thoughts that are now filled with torment, pain and anxiety for your mother. 

I pray for her, that she can make it through untilt he colostomy surgery. What date is is? She will be in my prayers for sure that day. 

Come here often to vent. We know your pain, we feel your pain, and we support your pain, and that of your dear mother. 

Gods blessings!

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