Late Stage: Edema & Ascites help needed...

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Late Stage: Edema & Ascites help needed...

by CharlieBear on Wed Feb 27, 2008 12:00 AM

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Hello

As some of you know I have been caring for my partner Gary now for over 2.5 years, with stage 4 colon cancer with mets to lung and liver.
In dec.07, the final regimen of chemo stopped working.  I have changed oncologists twice, we simply were not going to be told to go home and give up and stay comfortable, as a viable alternative just yet.

We set up a consult for SIRT spheres, even had the pre-surgical angiogram, but the day of the procedure, his bilirubin went to 2.9 and they could not do the procedure for fear of safety.

His bili went from 0.7 in mid december to 1.8 in early jan, to 1.3
then 2.0 the day of angio and 2.9 the day of SIRT
a week later it was 5.0  and then 7.0

by Feb 2nd it was 12, and a week later, 21.
FINALLY, this new doctor agreed to re-visit chemo since the other 2 boston oncologists did not.  Normally doing chemo at 5.0  is dangerous, 7.0 is usually not entertained.  So for someone to do it at 12 or 17 is (WHO KNOWS).

This doctor agreed to do drugs not metabolized in the liver, but ones metabolized in the kidney.  Once again, we are re-visiting Oxaliplatin, Avastin, and now for the first time, Gemzar.

The bili is still climbing, but has slowed down.  It went to 24 a week after chemo infusion #1, and 27 the day of chemo infusion #2.
I hope it goes down, or at least stays the same next week.

Last weekend, (known symptom) leg/foot swelling (edema) started.
Ascites (bloated stomach) has slowly been creeping up.

His blood sodium levels are low.  We were told to increase sodium in the diet.

A diuretic was prescribed (Spirolactonone(?)) but we took it and then stopped for fear of over-taxing the kidneys.

Kidney function was normal last week, now, BUN & Creatanine are elevated, i am fearing kidneys are now failing.
Urine has gone to very low output and motor-oil color.

Encephaly getting worse (confusion), lactalose liquid prescribed by mouth to help with that (ammonia in blood levels).

Today, after some 'real' sleep as opposed to that late stage patient 'twilight' sleep, he was much more clearer, not slurring speech, and alert.

I know it's a long stretch, but, if anyone has seen patients with these sort of symptoms, have you heard of any thing that can help with the stomach pain/ascites? Other than a 'tap' (parencintesis(?)).

Man if i could just get that weight off his legs or belly, what a help that could be.  I cant imagine what that man feels when he tries to stand, getting up from the couch, his legs act like they're 1,000 lbs.

I have not given up on miracles, amazingly his 'liver' side pain has stopped, the frequent low grade fevers stopped.  i dont even use pain meds, as much as you'd think.  he takes 2x5mg oxycodone 0-2 times a day. thats right, some days NO pain killer.

I am just giving the diuretic, sometimes lactalose, and thats about it really.

Any hope for any kind of symptom help with the ascites or how to get the liquids in his body to be excreted would be appreciated.

His strength and will and determination simply amaze me, to tears, and I dont know why at 49 years old he is enduring this.

I still haven't given up hope this drug may have caught things at the LAST minute and he'll start to recouperate.  His bile ducts could un-block spontaneously and his remaining liver function not-as-taxed, help returning him to somewhat slightly normal functioning.

Any stories of enlightenment appreciated!

-Charlie

RE: Late Stage: Edema & Ascites help needed...

by Lee1963 on Thu Feb 28, 2008 12:00 AM

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Charlie,

 I don't have any enlightening stories to share.  I am 45 years old this week and I have stage 4 colon cancer also.  I've been so lucky.  I had a Colon resection done in Nov of 2003 followed by 6 months of chemo.  Then in June of 2006 a spot was found on by liver.  I had a liver resection done in June of 2006 followed by another 6 months of surgery.  My last blood test and scans were done in December 2007 and all is good. 

 The only reason I responded to your message is that I'm inspired by your strength and commitment to your partner.  My wife has been my rock over the last 5 years.  She has been to every doctors appointment and shared in all the ups and downs of treatments and surgeries.  She is my inspiration and she (and my family and friends) have strengthened my faith in the human condition.  There are just so many great people out there in the world doing great things for others every day.

 You are a hero Charlie.  My prayers are with you and your partner.

 - Lee 

RE: Late Stage: Edema & Ascites help needed...

by Rosalind on Thu Feb 28, 2008 12:00 AM

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Acupuncture?  It helped with some of my mother's symptoms and I was lucky enough to find someone who would come to the house.

Good luck to you and your partner.     Roz

RE: Late Stage: Edema & Ascites help needed...

by hayes on Thu Feb 28, 2008 12:00 AM

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Dear Charley,  It sounds like you are giving your all to help your partner.  My sister has kidney cancer with mets.  She has had the ascites drawn off a couple of times.  Wonder if that would then reduce fluids in lower extremities? A mental health therapist named Bellaruth Naparstek has some beautiful, relaxing CDs.  She has some specifically for CA, health, depression, anxiety etc.  She has donated CDs to the VA for healing trauma of vets.  Her CDs are about $18.  I buy them on Amazon.  I am not involved in any way with her business, other than as a consumer.  They would be good for helping you stay in a good place, also.  My favorite so far is the one for trauma- it takes you on a tour of your heart.

Blessings and best wishes for you and your partner and everyone who is going through these trying times.

Catherine 

RE: Late Stage: Edema & Ascites help needed...

by Fancy on Thu Feb 28, 2008 12:00 AM

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hi charlie i sent you a private message.

RE: Late Stage: Edema & Ascites help needed...

by Torressl on Thu Feb 28, 2008 12:00 AM

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My dad was given an antibiotic, although I don't know the name of it.  He had ascites really bad and the nurses thought he wouldn't make it through - but he did.  This happened last Christmas after his surgery to remove the tumor in his colon.  The antibiotic made all the difference!  My prayers are with you!

RE: Late Stage: Edema & Ascites help needed...

by barbi on Mon Mar 03, 2008 12:00 AM

Quote | Reply

 

On 2/27/2008 CharlieBear wrote:

Hello

As some of you know I have been caring for my partner Gary now for over 2.5 years, with stage 4 colon cancer with mets to lung and liver.
In dec.07, the final regimen of chemo stopped working.  I have changed oncologists twice, we simply were not going to be told to go home and give up and stay comfortable, as a viable alternative just yet.

We set up a consult for SIRT spheres, even had the pre-surgical angiogram, but the day of the procedure, his bilirubin went to 2.9 and they could not do the procedure for fear of safety.

His bili went from 0.7 in mid december to 1.8 in early jan, to 1.3
then 2.0 the day of angio and 2.9 the day of SIRT
a week later it was 5.0  and then 7.0

by Feb 2nd it was 12, and a week later, 21.
FINALLY, this new doctor agreed to re-visit chemo since the other 2 boston oncologists did not.  Normally doing chemo at 5.0  is dangerous, 7.0 is usually not entertained.  So for someone to do it at 12 or 17 is (WHO KNOWS).

This doctor agreed to do drugs not metabolized in the liver, but ones metabolized in the kidney.  Once again, we are re-visiting Oxaliplatin, Avastin, and now for the first time, Gemzar.

The bili is still climbing, but has slowed down.  It went to 24 a week after chemo infusion #1, and 27 the day of chemo infusion #2.
I hope it goes down, or at least stays the same next week.

Last weekend, (known symptom) leg/foot swelling (edema) started.
Ascites (bloated stomach) has slowly been creeping up.

His blood sodium levels are low.  We were told to increase sodium in the diet.

A diuretic was prescribed (Spirolactonone(?)) but we took it and then stopped for fear of over-taxing the kidneys.

Kidney function was normal last week, now, BUN & Creatanine are elevated, i am fearing kidneys are now failing.
Urine has gone to very low output and motor-oil color.

Encephaly getting worse (confusion), lactalose liquid prescribed by mouth to help with that (ammonia in blood levels).

Today, after some 'real' sleep as opposed to that late stage patient 'twilight' sleep, he was much more clearer, not slurring speech, and alert.

I know it's a long stretch, but, if anyone has seen patients with these sort of symptoms, have you heard of any thing that can help with the stomach pain/ascites? Other than a 'tap' (parencintesis(?)).

Man if i could just get that weight off his legs or belly, what a help that could be.  I cant imagine what that man feels when he tries to stand, getting up from the couch, his legs act like they're 1,000 lbs.

I have not given up on miracles, amazingly his 'liver' side pain has stopped, the frequent low grade fevers stopped.  i dont even use pain meds, as much as you'd think.  he takes 2x5mg oxycodone 0-2 times a day. thats right, some days NO pain killer.

I am just giving the diuretic, sometimes lactalose, and thats about it really.

Any hope for any kind of symptom help with the ascites or how to get the liquids in his body to be excreted would be appreciated.

His strength and will and determination simply amaze me, to tears, and I dont know why at 49 years old he is enduring this.

I still haven't given up hope this drug may have caught things at the LAST minute and he'll start to recouperate.  His bile ducts could un-block spontaneously and his remaining liver function not-as-taxed, help returning him to somewhat slightly normal functioning.

Any stories of enlightenment appreciated!

-Charlie


 

hi charlie,

I read what you and your partner are going through and hang in there and do not give up! one thing stuck out to me though, if he is experiencing so much edema/ascites, I am suprised they told you to increase his salt intake. i understand that his sodium numbers were low, however sodium is a main contributor to edema. it is also contradictive that they put him on a diuretic and told him to increase his salt intake. i am not a dr., but i would follow up on increasing the sodium in the diet and see if that is really important.

i am not sure if he has a history of blood clots, but if he DOES NOT have a history of them, then gentle massage may help. you can lightly massage up the leg, towards the heart. this will get the fluids moving and circulating again. if he does have blood clots though, DO NOT massage, this can cause the blood clots to break free and you do not want that.

lastly, as tough as it sounds , the more he can get up and walk the better. again just to get he fluids circulating and moving..hopefully out! if he is too tired, doing exercises in bed or while in the chair could help too. 

 

hope this may help. don't give up! know that my thoughts are with you...and don't forget he is lucky to have you and you are doing an amazing job!

warmest regards,

barbi 

 

 

 

 

RE: Late Stage: Edema & Ascites help needed...

by Weadocm on Fri Mar 07, 2008 12:00 AM

Quote | Reply

I encourage you to check out the University of Pittsburgh Medical Center's Liver Cancer Center. Dr. David Geller is a miracle worker. I have many posts on this site about my dad's great experience (as great as great can be in the world of cancer) thanks to wonderful docs such as Dr. Geller. He has consulted others from this message board via email and phone/fax to see if he is working on anything that you may not have tried.

 Stay positive - it's half the battle and docs like Dr. Geller and our own Dr. Ahmed Ghany at OSU James and his staff are the other half!

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