Many questions sure would like some help

MzStarbucks10

Hello

I have posted here before. My dad has stage 4 colon cancer. Since June he has been going through radation and chemo pills. Now he is have chemo treatments 12 of them he is done with 6. He has been downgraded to stage 3.. . .

Questions

Being downgraded to stage 3 is that normal with all the chemo he is getting?

Will he always be considered stage 4 through doctor eyes?

What can we do to help eliminate the odor?

And that latest is that last week he spent the week in the hospital with blood clots
is this also normal?

He is having very bad diahera what can he eat or take that will help with this.

What kinda hand lotion is the best for his dry hands?

He has all kinds of dark spots on his head and hands is this also normal and what can be used on them to make them go away.


My dad is 70 years old and he is having some problems with his balance and having some of these systems is making it harder on him.

He has lost feeling in his finger tips and has problems emptying his bag so while he was in the hospital they just emptied his bag in a container and then dumped it. Now he is trying it at home and it seems to be working easier for him but the down side of it is that with his balance being off he is missing the toilet and he even dropped the container on the bedroom floor any suggestions?


Thanks

Barb

John23

Barb -
Barb -

Re:
"Being downgraded to stage 3 is that normal with all the chemo he is getting?
Will he always be considered stage 4 through doctor eyes?"

Who exactly "downgraded" the staging?

Your dad should have a home care nurse visiting and giving instructions
for you both.

The chemo and radiation side effects seem evident in what you describe
is your father's symptoms. His oncologist should be notified of any/all
problems and proper medicine applied to relieve those symptoms.

He should also have been provided with the name of a qualified
wound/ostomy nurse, and an appointment made to provide the
proper attention and instruction regarding the care of his ostomy.

I guess the bottom line is: have you called his physicians and
demanded that they provide the care required?

It's imperative that you do, as his advocate! It appears the physicians
either do not know of his problems, or don't care.

I would:
A. Let them know
B. Find other physicians if the present ones don't respond properly.


I hope the best for you both!

John

tootsie1

Hi
Barb,

My cancer was diagnosed early, so I didn't have to go through all that. I'm sure some of our Stage 3 and 4 people will chime in with great advice.

Just wanted to say hello and tell you I pray your dad will get things on a more even keel soon.

*hugs*
Gail

Lovekitties

Hi Barb
Nice of you to be looking for things to help your dad.

I can't help with all your questions but I am sure others will be along soon to give you help.

I have a colostomy so maybe I can offer some suggestions regarding that part of it.
I put a folding chair in the bathroom and move it as close as possible to the toilet, so that I sit facing the toilet when I empty the bag. You don't mention what kind of closure is on his bag, but there are several available from the major manufacturers. There is the standard plastic clip, which might be hard for dad to manage with the loss of feeling. There is also one that uses a velcro type product and also a new type from holister which is supposed to be easier still to work. If you contact the major manufactures and explain the problem, they will suggest options and even send free samples. That way dad can try them out to see what works best.

I don't know that I have ever heard of staging being downgraded. I guess it is possible if there was a mistaken diagnosis at the start.

Hope some of this helps. As I said earlier I am sure others will chime in soon to help from their own experiences.

Marie

Sundanceh

Hi Barb:)
I'll try to field a few of these...

Will he always be considered stage 4 through doctor eyes?
A: My understanding is that once you are a Stage IV, that's the stage that you remain. If you were a different stage and then you had metastasis, then that's an automatic Stage IV.

And that latest is that last week he spent the week in the hospital with blood clots
is this also normal?
A: I know of people who have developed blood clots, it does happen. Coumadin can be used to treat this.

He is having very bad diahera what can he eat or take that will help with this.
A: Get a script for LOMOTIL - this cuts back on the spasms and will help.

What kinda hand lotion is the best for his dry hands?
A: Depends on if you want oily or a more lotion type. BAG BALM is a good emollient and can be found at your pharmacy. Also, UDDER CREAM is a good one.

My dad is 70 years old and he is having some problems with his balance and having some of these systems is making it harder on him.
A: Could be from the radiation treatments. My balance has been off for awhile but since getting back on radiation again, I've noticed I'm just too weak and can stumble and fumble.

He has lost feeling in his finger tips
A: This sounds like neuropathy so it sounds like his chemo is Oxaliplatin. Ask your onc to infuse MAGNESIUM SULFATE for his next treatments...it does not work on all patients, but if it does work for someone, it significantly eases their neuropathy symptoms and makes the treatments more bearable.

I'm sure more folks will come along and help you to fill in the blanks on your other questions and add to these.

Best of luck and welcome back.

-Craig

Patteee

Hi- I will take a stab at
Hi- I will take a stab at the odor and bag issues your Dad is having. I am assuming the odor you are referring to is from the bag? So he is having seal issues? The very first thing I would recommend is setting up some appointments for him with a stoma nurse. Most local hospitals have them on staff, an appointment should be easy to get. Truly they are magical when it comes to ideas and different appliances to try. In my case? I had a temporary colostomy for 6 months. The first appliance was 2 part, the ring with clay for the seal, then the bag would hook on. I would empty the bag from the bottom. I also wore a belt to try and get a better seal. Nothing I did would work and the breaking through smell on the seal, was, well, disgusting. I always made this huge mess in the toilet, until I figured out to line the bowl with toilet paper to avoid the splashes. I worked with several stoma nurses, finally after a couple of trips to Mayo nurses, I was looking at a much better solution. I ended up with a one bag piece that was smaller, much easier to change and never had a break through on the seal. I changed it about 2-3 times a day. I would light a candle in the bathroom, get a plastic bag (just a small one from like Target), peel off the old bag, it would then go into the plastic bag, it would be tied up quickly. New bag put on, old used bag to the outside garbage. My only issue is horrid eyesight- I found a 100x magnifying mirror that I would put on the bathroom counter and what a difference that made in getting the bag on perfect. My whole point is that the stoma nurses were the ones who never gave up on helping me find a solution that worked for me. The smell really bothered me, to the point I was a paranoid mess worrying about it. They were so good in understanding and supporting me with it.

MzStarbucks10

Many questions sure would like some help
My fathers onc doctor downgraded him. I talked to him myself and that is what he told me, I asked him how my dad can have stage 4 and now be a stage 3 he said that the chemo is doing its job and hopefully he will be cured enough that he won't have many more treatments.

When my father goes to his treatments, he has his blood work done and then he sees the doctor, I always have notes with questions on it so that my father can ask and write them down. Doest happen so I have to call.

As for the odor I don't know what to do about this, his bag is attached he has no leakage, its just the smell.

thxmiker

Blood clots are a not so
Blood clots are a not so common side effect of the surgery. I am 47 and other then cancer am in good health and my second surgery I had clots. I am on coumadin to help avoid future clots. Ask your doctor what he/she recommends.

Ask your doctor about immodium. I take several a day now to help get moisture from my colon and make my stool harder. (Again, Ask your doctor what he recommends.)

The bruising is normal for cancer. I am not sure why, but my doctor told me this was normal.

Numbness and tingeling in the finger tips is somewhat normal. It should not be painful, but definitely there. Also sensitivity to cold. My lips even tingle after Chemo treatments.

You may need to go with your father and ask the Doctor a lot of questions. The nurses will also have a lot of information on how to treat symptoms. If they do not have a lot of answers time to find another doctor!

The down grading may be due to overly cautious rating before surgery.

Best Always, mike

John23

MzStarbucks10 said:

Many questions sure would like some help
My fathers onc doctor downgraded him. I talked to him myself and that is what he told me, I asked him how my dad can have stage 4 and now be a stage 3 he said that the chemo is doing its job and hopefully he will be cured enough that he won't have many more treatments.

When my father goes to his treatments, he has his blood work done and then he sees the doctor, I always have notes with questions on it so that my father can ask and write them down. Doest happen so I have to call.

As for the odor I don't know what to do about this, his bag is attached he has no leakage, its just the smell.

Barb -
You really, really should get other opinions from physicians
that are not of the same group or organization as the present
physicians. If it means going to another town, than it should
be done. The "stage" is not usually re-set as time passes,
and it would be too soon after treatments right now, to consider
any improvement level. So even if re-staging was prudent, there
would not be sufficient factual information for a physician to
do so, so soon after treatment.

As far as "smell"? A colostomy will have odors, while an ileostomy
usually does not (unless there is an obstruction). There are
"drops" that can be bought to put into the pouch to quell the
odors (M-9 drops), and you can order that from whoever
supplies the present ostomy supplies.

Your father's experiencing the side effects of treatment, and
the oncologist should be taking care of that for him. That is
something that should be addressed immediately.

If it's possible for you to go with your father to each and
every physician's visit, you should try to do so. At his age,
and for most people under stress, the ability to remember
all that's said, is weak at best. Having another person listening
and asking questions, is always the best situation to have.


Hoping for the best,

John

Lori-S

thxmiker said:

Blood clots are a not so
Blood clots are a not so common side effect of the surgery. I am 47 and other then cancer am in good health and my second surgery I had clots. I am on coumadin to help avoid future clots. Ask your doctor what he/she recommends.

Ask your doctor about immodium. I take several a day now to help get moisture from my colon and make my stool harder. (Again, Ask your doctor what he recommends.)

The bruising is normal for cancer. I am not sure why, but my doctor told me this was normal.

Numbness and tingeling in the finger tips is somewhat normal. It should not be painful, but definitely there. Also sensitivity to cold. My lips even tingle after Chemo treatments.

You may need to go with your father and ask the Doctor a lot of questions. The nurses will also have a lot of information on how to treat symptoms. If they do not have a lot of answers time to find another doctor!

The down grading may be due to overly cautious rating before surgery.

Best Always, mike

Also Barb
Since you said he had radiation and chemo pills, I'm assuming (correct me if I 'm wrong) that he had rectal cancer. If that is the case they usually stage rectal before any surgeries and therefore it is considered a clinical stage and after sugery they will give what is a pathological stage. So, there may some differences that can be accounted for with staging prior to surgery. It's funny becaue I had a lower staging after surgery and was upgraded (HA! - I want my to cancel my flight!) again not long after surgery because it was felt that my previous staging didn't taken into account the whole picture. So, the doctors may change the staging and especially rectal cancer because they want to do an assessment in order to start a treatment plan, usually shrink the tumor with rad/chemo first then worry about if or when surgery is needed. Therefore, many times (not always) rectal patients are staged clinically first and then might have their staging changed after more information is known.

Lori-S

Barb
Not a god night for me to type but, I wanted to help. first welcome to the board. Craigs addressed so many of the issues you asked about so well. Thanks Craig!

What is the odor you are referring to? There can be so many different odors from body odor from chemo or systems not working right to ostomy odors. If you are talking about ostomy/bag odor, you didn't say if an ileo or a colostomy. If the odor is when he has the colostomy bag closed and not when he is changing, I've found that if mine has oder when closed then it is because I have a break in the barrier. Even a small break in the seal can cause odors eventhough it is not leaking. Make sure that his seal is good and if not then change the bag to head off any possible leaks.

Again welcome to the board and I hope that you can find some solutions to your father's problems here with the very good responses form everyone.

PS sometimes the balnce thing is due to the oxy drug as the neuropathy in his feet can cause stumbling and what appears to be balance problems because you can't feel your feet. Make sure he sits down to empty his bag if that might be the case.

Ugh pelase forgive typos as I'm tired of fixing them. today was chemo infusion and i'm not doung that well with my fingers

La.Grammy

Hi Barb
My husband had a
Hi Barb

My husband had a ileostomy for 7 months which had a odor.
A nurse told him to put 2 or 3 drops of mouthwash in the bag each time it was emptied & that did the trick. Ask your dads doctor about lomotil for the nausea.
Hope this helps.

Kerry S

I am close to your dads age at 67
Under Medicare with my insurance, there is no charge for a nurse to come to the house. They helped me a bunch with my bag problems. Stat wise, I get into a bag mess about every 17 days. The big thing is to make him a bag keeper for bed time. Buzz said to get a woman’s tube top to keep it in place. A dumped bag in bed really sucks. The scary old woman made me one out of self preservation. She now wakes me every night at 3 am to do a bag dump. That works great.

As to the smell problem, our dog loves it. The scary old woman hates it. Being a dirty old man, I don’t care as I smoke and can’t smell much anyway.

Kerry

MzStarbucks10

Kerry S said:

I am close to your dads age at 67
Under Medicare with my insurance, there is no charge for a nurse to come to the house. They helped me a bunch with my bag problems. Stat wise, I get into a bag mess about every 17 days. The big thing is to make him a bag keeper for bed time. Buzz said to get a woman’s tube top to keep it in place. A dumped bag in bed really sucks. The scary old woman made me one out of self preservation. She now wakes me every night at 3 am to do a bag dump. That works great.

As to the smell problem, our dog loves it. The scary old woman hates it. Being a dirty old man, I don’t care as I smoke and can’t smell much anyway.

Kerry

Your posts make me laugh
Kerry

You are a funny person, I have read some of your posting OMG I read the post about the bacon to my dad and we both laughed. Thanks for making him laugh today

MzStarbucks10

Lovekitties said:

Hi Barb
Nice of you to be looking for things to help your dad.

I can't help with all your questions but I am sure others will be along soon to give you help.

I have a colostomy so maybe I can offer some suggestions regarding that part of it.
I put a folding chair in the bathroom and move it as close as possible to the toilet, so that I sit facing the toilet when I empty the bag. You don't mention what kind of closure is on his bag, but there are several available from the major manufacturers. There is the standard plastic clip, which might be hard for dad to manage with the loss of feeling. There is also one that uses a velcro type product and also a new type from holister which is supposed to be easier still to work. If you contact the major manufactures and explain the problem, they will suggest options and even send free samples. That way dad can try them out to see what works best.

I don't know that I have ever heard of staging being downgraded. I guess it is possible if there was a mistaken diagnosis at the start.

Hope some of this helps. As I said earlier I am sure others will chime in soon to help from their own experiences.

Marie

Marie
The closure on the bag is with the plastic clip, it seems to be the easyist for him.(holister) When he was in the hospital they gave him the velcro and it was hard for him to roll up.

As for the staging, I was very confused, I never heard of anyone being downgraded. So maybe you are right in the miss diagnosis.


Bar

MzStarbucks10

John23 said:

Barb -
Barb -

Re:
"Being downgraded to stage 3 is that normal with all the chemo he is getting?
Will he always be considered stage 4 through doctor eyes?"

Who exactly "downgraded" the staging?

Your dad should have a home care nurse visiting and giving instructions
for you both.

The chemo and radiation side effects seem evident in what you describe
is your father's symptoms. His oncologist should be notified of any/all
problems and proper medicine applied to relieve those symptoms.

He should also have been provided with the name of a qualified
wound/ostomy nurse, and an appointment made to provide the
proper attention and instruction regarding the care of his ostomy.

I guess the bottom line is: have you called his physicians and
demanded that they provide the care required?

It's imperative that you do, as his advocate! It appears the physicians
either do not know of his problems, or don't care.

I would:
A. Let them know
B. Find other physicians if the present ones don't respond properly.


I hope the best for you both!

John

John
The downgrading came from the onc himself.

As for the home care nurse, we did have 1 for a few weeks after my dad's surgery, I was home for every visit with her. I learned more in the hospital!!!!!

My dad doesn't have problems with the bag and in changing himself, he actually does a good job, the problem is the odor.

I have gone into the doctors office with my dad and have had many questions answered, but it seems like every other week is something new.

I don't go with my dad to every chemo appt. (thats when he sees the doctor too) but these last 2 appts my dad has come home and told me things that don't make sense to me, so I do call and the doctor will tell me what is going on.

Thanks John

MzStarbucks10

Sundanceh said:

Hi Barb:)
I'll try to field a few of these...

Will he always be considered stage 4 through doctor eyes?
A: My understanding is that once you are a Stage IV, that's the stage that you remain. If you were a different stage and then you had metastasis, then that's an automatic Stage IV.

And that latest is that last week he spent the week in the hospital with blood clots
is this also normal?
A: I know of people who have developed blood clots, it does happen. Coumadin can be used to treat this.

He is having very bad diahera what can he eat or take that will help with this.
A: Get a script for LOMOTIL - this cuts back on the spasms and will help.

What kinda hand lotion is the best for his dry hands?
A: Depends on if you want oily or a more lotion type. BAG BALM is a good emollient and can be found at your pharmacy. Also, UDDER CREAM is a good one.

My dad is 70 years old and he is having some problems with his balance and having some of these systems is making it harder on him.
A: Could be from the radiation treatments. My balance has been off for awhile but since getting back on radiation again, I've noticed I'm just too weak and can stumble and fumble.

He has lost feeling in his finger tips
A: This sounds like neuropathy so it sounds like his chemo is Oxaliplatin. Ask your onc to infuse MAGNESIUM SULFATE for his next treatments...it does not work on all patients, but if it does work for someone, it significantly eases their neuropathy symptoms and makes the treatments more bearable.

I'm sure more folks will come along and help you to fill in the blanks on your other questions and add to these.

Best of luck and welcome back.

-Craig

Craig
Thanks for the reply

As for the staging - My dad found out this past Feb. that he had colon cancer, he was to have surgery the following week-----------he didn't, he want'ed to get the house fixed so that me and my daughter could move in with him. At that point the cancer was a stage 2--in May he got very sick had to rush him to the hospital and found out that he had a perferated bowel and that is when they told me he was a stage 4.

He is now on coumandin, but still isn't regulated

The diareaha - the doctor is now having him take shots of a rare medicine (don't know the name) I was still at work and didn't know this till I got home.

When I first started posting here was right after his surgery, I was very scared and didn't know if I was able to really help him lolol that was easy, what WE are dealing with is the scary part. I feel helpless and when he was in the hospital he had the clots (I know were not me fault) but he was also dehydrated and I felt like that was my fault. Like I wasn't doing my part in taking care of him

Done ranting

Barb

MzStarbucks10

La.Grammy said:

Hi Barb
My husband had a
Hi Barb

My husband had a ileostomy for 7 months which had a odor.
A nurse told him to put 2 or 3 drops of mouthwash in the bag each time it was emptied & that did the trick. Ask your dads doctor about lomotil for the nausea.
Hope this helps.

Scope
I bought some Scope today and talked to my dad about this he agreed, now just making sure he does it.


Thanks for the reply

Barb

MzStarbucks10

Lori-S said:

Also Barb
Since you said he had radiation and chemo pills, I'm assuming (correct me if I 'm wrong) that he had rectal cancer. If that is the case they usually stage rectal before any surgeries and therefore it is considered a clinical stage and after sugery they will give what is a pathological stage. So, there may some differences that can be accounted for with staging prior to surgery. It's funny becaue I had a lower staging after surgery and was upgraded (HA! - I want my to cancel my flight!) again not long after surgery because it was felt that my previous staging didn't taken into account the whole picture. So, the doctors may change the staging and especially rectal cancer because they want to do an assessment in order to start a treatment plan, usually shrink the tumor with rad/chemo first then worry about if or when surgery is needed. Therefore, many times (not always) rectal patients are staged clinically first and then might have their staging changed after more information is known.

Lori-S
Yes he has colon cancer. When we first found out he was a stage 2, after surgery he was a stage 4.

My dad found out in Feb. that he had cancer, he was to have surgery that following week--------he didn't. In May he got real sick and we rushed him to the hospital and they found the he had a perferated bowel, they did surgery the next morning, so there was no treatment before the surgery.


I don't know how you feel, but I know how my dad's fingers feel but, I get to see first hand, so I hope that your numbing goes away soon. maybe you can send that on a flight and not cancel!!!!!!

Thanks for your reply

Barb