looking for advice for Dad's mobility?

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lucyg00s3y
Posts: 5
Joined: Sun Jul 23, 2017 9:11 pm

looking for advice for Dad's mobility?

Postby lucyg00s3y » Sun Jul 23, 2017 9:31 pm

I am not a colon cancer patient but my dad was diagnosed three weeks ago with stage IV metastatic to liver colon cancer (forgive me if this is not the correct way to describe this), and I've been looking around these boards ever since and am at the point where I am needing some advice and perspective. He went into the ER at the beginning of the month for weakness his doctor thought might be related to a heart issue, was found to be anemic enough for a blood transfusion, and received a colonoscopy during his stay that revealed the tumor and that cancer had spread to the liver.

He came home and for the past two weeks was having trouble sleeping, was kind of weak, still able to walk around and get upstairs to bed by himself, but then last Wednesday he suddenly became so weak he couldn't make it to bed so we took him to the ER again and he has been in the hospital ever since. He had been scheduled to get outpatient surgery for a chemo port on Thursday, which he ended up getting as inpatient since he was in the hospital, and then on Friday he started chemo a few days earlier than expected (he was going to start this upcoming Wednesday).

HIs extreme weakness is what I have a question about. Has anyone else who is a patient or caregiver experienced extremely weakness like this before even starting chemo? Especially with an older cancer patient? I know that chemo already wipes people out, so I am worried with him feeling so unwell before even getting treatment that he is in for a rough time. I am hoping that he will be able to at least get around with a walker or a wheelchair at some point in the future and not remain bedridden.

Right now, he has not been able to get up and walk around by himself since being in the hospital, and this was before starting chemo. He apparently got a visit from the PT in the hospital who had him do some exercises and standing on his own and said he was doing well, but today when we visited him the doctor told my mother and me that when thinking about when he's discharged from the hospital we should consider either having him stay in a rehab facility/nursing home or having a home health/nurse service or hospice (which is a scary word) come in to our house (having him home is ideal option and definitely doable with our living situation). I am scared of the idea of hospice (even though I asked the doctor, "hospice doesn't necessarily mean end-of-life care, right?" and she said no) and of my dad losing all mobility. I know everyone's experience is different too, but my mom and I just feel super shocked that this seems to have gone from what feels like zero to 100 so quickly.
Dad (76) diagnosed with stage IV colon cancer w mets to liver 7/7/17
Started Chemo (Avastin, Oxaliplatin and Fluorouracil) 7/21

Lee
Posts: 6207
Joined: Sun Apr 16, 2006 4:09 pm

Re: looking for advice for Dad's mobility?

Postby Lee » Mon Jul 24, 2017 11:37 am

Hi and welcome,

Do you know what type of chemo they are giving your dad?

How old is your dad?

No extreme weakness is not normal. You might want to have a talk with his Dr and see what s/he says regarding your dad current condition.

Have the doctors talk to you (and your mom) on how they want to treat your dad? Is surgery something that's been discussed?

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!

Rainykatie
Posts: 35
Joined: Wed Apr 19, 2017 2:58 pm

Re: looking for advice for Dad's mobility?

Postby Rainykatie » Mon Jul 24, 2017 12:42 pm

Hi lucy,

I'm sorry you and your family are going through this. I'm pretty new at this myself, but I wanted to chime in because I'm in similar shoes - caring for my mom who has Stage IV colon cancer that has spread to her liver. She is 73, and got the diagnosis 3 months ago. She moved in with me at the time of her diagnosis to get extra help and care. I felt like you, shocked because it also felt like things escalated so quickly and in just a few weeks time went from being perfectly normal to gravely ill.

When the cancer was discovered, she was very weak. She had zero appetite and would not eat. She was very fatigued and slept for most of the day, every day. In addition to being weak, she was in a lot of pain. She was hospitalized for some time as well because at one point she had a partial blockage- it cleared on its own while we were waiting for surgery. It was really quite scary and I was surprised that she was even able to start chemo, but she started within a couple weeks of the diagnosis. She's been through 6 rounds of FOLFOX now. After about the 3rd treatment, she started feeling better and would regain her energy in between treatments. The oncologist says the chemo is doing its job, and her tumors have been shrinking. Now she is pretty much back to almost normal energy levels. She is walking 2 miles a day and eating normally. I'm not sure what the road is ahead of us, but I do know that for now it seems things are going well so we are enjoying every day. I know it seems weird, based on all the connotations around chemo, that chemo could actually improve someone's energy levels but in the case of my mom the symptoms of the disease really have been reduced.

It does seem like the level of fatigue your Dad is experiencing is unusual. I know this time is really tough for everyone, trying to navigate this new world, figuring out what needs to happen. I wish for you that your Dad too will respond well to chemo and improve, and that you'll have more good days ahead together. One thing I have learned here on this forum is that Stage IV isn't necessarily a death sentence, many patients live for years with a good quality of life with the treatments that are available today.

I hope this helps! Please stick around and talk more with us, we are all in this together.
Caregiver to my mom (73)
Dx Stage IV w/ liver, bone mets 4/14/17
Folfox started 4/25/17 - 8 rounds
Took a 6 week break to check some things off the bucket list - great response from chemo - everything shrunk and liver tumors virtually gone
CT scan 9/2017 showed spread to ovaries- laparoscopic surgery at MSK
Resumed Folfox 10/23/17 - 1 round
Surgery to remove primary tumor due to discomfort, 11/7/17. Trouble with recovery, numerous mets to abdomen area found
Passed 12/5/17

lucyg00s3y
Posts: 5
Joined: Sun Jul 23, 2017 9:11 pm

Re: looking for advice for Dad's mobility?

Postby lucyg00s3y » Mon Jul 24, 2017 1:24 pm

Lee wrote:Hi and welcome,

Do you know what type of chemo they are giving your dad?

How old is your dad?

No extreme weakness is not normal. You might want to have a talk with his Dr and see what s/he says regarding your dad current condition.

Have the doctors talk to you (and your mom) on how they want to treat your dad? Is surgery something that's been discussed?

Lee


Hi Lee, he is on Avastin, Oxaliplatin and Fluorouracil for chemo. His oncologist said that he should start chemo and see how that goes before doing surgery because by the time he recovered from surgery the cancer could have spread further. I think depending on how the chemo goes, surgery is an option down the line.
Dad (76) diagnosed with stage IV colon cancer w mets to liver 7/7/17
Started Chemo (Avastin, Oxaliplatin and Fluorouracil) 7/21

lucyg00s3y
Posts: 5
Joined: Sun Jul 23, 2017 9:11 pm

Re: looking for advice for Dad's mobility?

Postby lucyg00s3y » Mon Jul 24, 2017 1:27 pm

Rainykatie wrote:Hi lucy,

I'm sorry you and your family are going through this. I'm pretty new at this myself, but I wanted to chime in because I'm in similar shoes - caring for my mom who has Stage IV colon cancer that has spread to her liver. She is 73, and got the diagnosis 3 months ago. She moved in with me at the time of her diagnosis to get extra help and care. I felt like you, shocked because it also felt like things escalated so quickly and in just a few weeks time went from being perfectly normal to gravely ill.

When the cancer was discovered, she was very weak. She had zero appetite and would not eat. She was very fatigued and slept for most of the day, every day. In addition to being weak, she was in a lot of pain. She was hospitalized for some time as well because at one point she had a partial blockage- it cleared on its own while we were waiting for surgery. It was really quite scary and I was surprised that she was even able to start chemo, but she started within a couple weeks of the diagnosis. She's been through 6 rounds of FOLFOX now. After about the 3rd treatment, she started feeling better and would regain her energy in between treatments. The oncologist says the chemo is doing its job, and her tumors have been shrinking. Now she is pretty much back to almost normal energy levels. She is walking 2 miles a day and eating normally. I'm not sure what the road is ahead of us, but I do know that for now it seems things are going well so we are enjoying every day. I know it seems weird, based on all the connotations around chemo, that chemo could actually improve someone's energy levels but in the case of my mom the symptoms of the disease really have been reduced.

It does seem like the level of fatigue your Dad is experiencing is unusual. I know this time is really tough for everyone, trying to navigate this new world, figuring out what needs to happen. I wish for you that your Dad too will respond well to chemo and improve, and that you'll have more good days ahead together. One thing I have learned here on this forum is that Stage IV isn't necessarily a death sentence, many patients live for years with a good quality of life with the treatments that are available today.

I hope this helps! Please stick around and talk more with us, we are all in this together.


Hi Rainykatie, that sounds very similar to my dad. He also had zero appetite and would eat extremely small meals, sleeping on and off throughout the day. Luckily he is not in pain right now. I am glad to hear your mom is doing a lot better after her rounds of chemo, and that gives me hope that my dad may get some of his energy back.
Dad (76) diagnosed with stage IV colon cancer w mets to liver 7/7/17
Started Chemo (Avastin, Oxaliplatin and Fluorouracil) 7/21

lucyg00s3y
Posts: 5
Joined: Sun Jul 23, 2017 9:11 pm

Re: looking for advice for Dad's mobility?

Postby lucyg00s3y » Mon Jul 24, 2017 2:37 pm

Lee wrote:Hi and welcome,

Do you know what type of chemo they are giving your dad?

How old is your dad?

No extreme weakness is not normal. You might want to have a talk with his Dr and see what s/he says regarding your dad current condition.

Have the doctors talk to you (and your mom) on how they want to treat your dad? Is surgery something that's been discussed?

Lee


I forgot to answer one of your questions on my last reply. My dad is 76.
Dad (76) diagnosed with stage IV colon cancer w mets to liver 7/7/17
Started Chemo (Avastin, Oxaliplatin and Fluorouracil) 7/21

NHMike
Posts: 2555
Joined: Fri Jul 21, 2017 3:43 am

Re: looking for advice for Dad's mobility?

Postby NHMike » Mon Jul 24, 2017 4:22 pm

How well is he eating?

When I found out, I had a lot of trouble eating and sleeping and dropped about 10 or 12 pounds in five weeks. I did feel weak a lot of the time because of that.

We've had to put my mother in a Skilled Nursing Facility a few times over the past couple of years as we needed an environment where she would be cared for and get physical therapy. She wasn't able to cook and clean for herself at those times. Something similar might work out well for your father.
6/17: ER rectal bleeding; Colonoscopy
7/17: 3B rectal. T3N1bM0. 5.2 4.5 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6, 5 x 5
7/17-9/17: Xeloda radiation
7/5: CEA 2.7; 8/16: 1.9; 11/30: 0.6; 12/20 1.4; 1/10 1.8; 1/31 2.2; 2/28 2.6; 4/10 2.8; 5/1 2.8; 5/29 3.2; 7/13 4.5; 8/9 2.8, 2/12 1.2
MSS, KRAS G12D
10/17: 2.7 2.2 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 (-75%), 5 x 3 (-40%). 5.1 CM from AV
10/17: LAR, Temp Ileostomy, Path Complete Response
CapeOx (8) 12/17-6/18
7/18: Reversal, Port Removal
2/19: Clean CT

Lee
Posts: 6207
Joined: Sun Apr 16, 2006 4:09 pm

Re: looking for advice for Dad's mobility?

Postby Lee » Mon Jul 24, 2017 7:56 pm

lucyg00s3y wrote:Hi Lee, he is on Avastin, Oxaliplatin and Fluorouracil for chemo. His oncologist said that he should start chemo and see how that goes before doing surgery because by the time he recovered from surgery the cancer could have spread further. I think depending on how the chemo goes, surgery is an option down the line.


Okay, it really does sound like your Dad is in good hands. 76 is still kind of young. If he were 10+ years older, I would be saying, just make him comfortable. As others have said, hopefully with some chemo under his belt, he will start of feel better, and be more active. The chemo regiment is telling me they are going beyond just making his comfortable, they want to attack it. That is a good sign.

If he is not eating a lot, maybe protein shakes like Ensure to help supplement his diet for awhile.

Maybe a rehab might be a good idea for a while unless he can get good care at home. Until he can assume more activity. Maybe palliative care might not be a bad idea either. It's not hospice.

When you can, try to create a signature line with the above info along with age and staging. It will help others when you ask questions. I really thought your Dad was 85 pushing 90, thus important info.

Remember we are here, ask questions. and again, welcome. Just sorry for the reason you had to join.

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!

lucyg00s3y
Posts: 5
Joined: Sun Jul 23, 2017 9:11 pm

Re: looking for advice for Dad's mobility?

Postby lucyg00s3y » Tue Jul 25, 2017 10:30 am

Thanks everyone for your kindness and help with my questions. Glad to have found such a supportive community.
Lee, thanks for the tip on updating my signature! I've done so.
Dad (76) diagnosed with stage IV colon cancer w mets to liver 7/7/17
Started Chemo (Avastin, Oxaliplatin and Fluorouracil) 7/21

Rainykatie
Posts: 35
Joined: Wed Apr 19, 2017 2:58 pm

Re: looking for advice for Dad's mobility?

Postby Rainykatie » Thu Jul 27, 2017 5:53 pm

Lee

Hi Lee, he is on Avastin, Oxaliplatin and Fluorouracil for chemo. His oncologist said that he should start chemo and see how that goes before doing surgery because by the time he recovered from surgery the cancer could have spread further. I think depending on how the chemo goes, surgery is an option down the line.


Hi again, that is similar to what they told me about my mom. Because she was so weak and not doing well, it seemed to be a bit of triage situation and they wanted to start chemo immediately to put a stop to the cancer growth before even thinking about surgery.

Also, regarding the diet, it was really hard to get enough calories in my mom but she started doing better once I could. When she was really weak and not eating after being hospitalized, I would make her a super high calorie shake that she enjoyed (or at least was able to drink). I would put in a blender: 1 cup of vanilla Haagan Das ice cream (HD has the highest calories of ANY ice cream by the way, like double the usual amount), 1 banana, some frozen mangos, and 1 bottle of Ensure Plus (which has 350 calories for 10 oz). I would have to stay on her to drink it, but she did and would get like half her daily calories that way.

She also really didn't like the thick nutritional shakes for a while, but I bought Ensure Clear online. Ensure Clear was about 200 calories per bottle, and had some protein in it (7 g). It was like drinking juice but at least she got something from it. Since she couldn't stomach a whole lot of food, drinking those was honestly a lifesaver since she was getting some nutrition with each sip instead of filling up on water.

Those two things got us through the first, very rough, month.

Let me know if you need any other ideas!
Caregiver to my mom (73)
Dx Stage IV w/ liver, bone mets 4/14/17
Folfox started 4/25/17 - 8 rounds
Took a 6 week break to check some things off the bucket list - great response from chemo - everything shrunk and liver tumors virtually gone
CT scan 9/2017 showed spread to ovaries- laparoscopic surgery at MSK
Resumed Folfox 10/23/17 - 1 round
Surgery to remove primary tumor due to discomfort, 11/7/17. Trouble with recovery, numerous mets to abdomen area found
Passed 12/5/17

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wwroam
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Location: Brisbane, Australia
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Re: looking for advice for Dad's mobility?

Postby wwroam » Thu Jul 27, 2017 6:23 pm

How are his haemoglobin levels ?
I recently completed 4 rounds of GemCarb chemo for lung cancer.
My haemoglobin levels were slightly above half the reference range and I was so tired . Over the last round of chemo and the week afterwards I received transfusions of 8 units of blood.
Low haemoglobin levels are so debilitating.
Stage 3a DX 25/06/07
Folfox complete 30/01/08
7 years NED
Port scheduled for removal 8/02/10 Gone.
PSA .54 No prostate problems
Diagnosed Type 2 Diabetic
SO diagnosed CC Stage IV Liver Mets 23/03/15


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