90 year old mother in law --FOLFOX

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fordodo
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90 year old mother in law --FOLFOX

Postby fordodo » Sun Feb 05, 2017 10:17 pm

I have lurked here reading all your stories in awe of your strength and willingness to help one another. I am here for my Mother In Law who is an amazing, strong woman who has stage IV colon cancer. She had surgery, recovered and has been on 5FU alone since September. This past scan a lymph node grew from 4.7 to 5.5. My husband spoke to her oncologist and he is suggesting Folfox --the 85 dose. I am scared for her from what I have read. Although she is of sound mind, body and in good health otherwise...Folfox's neuropathy issues make me question if its worth it for her to try? A different doctor we know mentioned the mini dose of 65 to access tolerance and this seems somewhat more reasonable. I have also wondered if pushing for Folfiri is a better option. I am an avid researcher and believe that sometimes the best advice you can receive is from those who have been through it...so I am turning to all of you in hopes you can offer opinions and advice. My Mother In law is an amazing woman and the last thing I want is for her to suffer. Thank you in advance!
cos

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dianetavegia
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Re: 90 year old mother in law --FOLFOX

Postby dianetavegia » Mon Feb 06, 2017 8:51 am

Since we know that OXY only raises the survival rate by 5% to 7% in studies, and personally, I know the side effects of FOLFOX, I would think long and hard about giving chemo to a 90 year old woman. My thought process is first, 5FU is a good portion of FOLFOX and it hasn't stopped the node from enlarging (mm or cm? a small bit) and we're not looking to add 10 to 20 years of life to your mother in law, I would think QUALITY of life would be much more important that quantity.

The FOLFOX4 (NOTE: FOLFOX and not just 5FU) regimen increased the probability that a patient would be alive and disease-free at 3 years by 5.3% (except >70 years). However, survival probability dropped drastically stage IIIB onwards with Mayo clinic protocol.


With Mayo clinic regimen, five year overall survival probability in the age groups >70 years group had three years survival probability of 50% but no patient survived till five years of starting the treatment (p<0.0001). With FOLFOX4 protocol, the five year survival probability was 0% for >70 years; for rest of the age groups, survival ranged between to 80-88%.

The five year survival probability with Mayo clinic and FOLFOX4 protocol in stage IIIA was 80%; for stage IIIB, it was 55% while for stage IIIC, it was 50%. Both protocols yielded 95% survival in stage II. However, three year survival with FOLFOX4 protocol was 50%. (p < 0.0001).


NOTE: FOLFOX6 is the newest form being given, not FOLFOX4. This study was published in 2013 so stats are from probably 2006 to 2011?

EDITED to correct misleading remark re 5FU vs FOLFOX.

Remember: Oncologists = chemo. Surgeons = surgery. Radiologist = radiation, etc. It's what they 'do'.

Question, is the lymph node the ONLY spread and the cause of the Stage IV dx?

There's an awesome article on the internet written by a doctor. It's called 'How Doctors Die'. http://www.rd.com/health/conditions/how-doctors-choose-to-die/ It might help you think this through while deciding what to recommend. If it were me and I was 90 or my mother who is 85, I would have her enjoy the time she has been given and forgo anything that might make her feel bad. That's MY opinion and only my opinion.

Best of luck, and hope your sweet mil has many good years ahead of her.
Diane
Last edited by dianetavegia on Fri Feb 10, 2017 9:16 am, edited 2 times in total.
Stage III cc surgery 1/7/09. 12 tx FOLFOX
Stage IV PET = 1.5cm liver met. HR 4/11/12

14 years since dx and 11 years post liver resection.
Pronounced CURED and discharged by onc

“O Lord my God, I cried out to You, And You healed me.” Psalms 30:2

fordodo
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Re: 90 year old mother in law --FOLFOX

Postby fordodo » Mon Feb 06, 2017 9:31 am

Thank you for your reply. Yes, the spread to nodes is the reason for the Stage IV diagnosis. There are spots on her liver and lung but they have not determined if those are cancerous or not I believe. Is there a specific study regarding the 5 to 7 percent increase in survival?
cos

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dianetavegia
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Re: 90 year old mother in law --FOLFOX

Postby dianetavegia » Mon Feb 06, 2017 2:28 pm

FOLFOX is generally given to patients who are Stage I to Stage III and not Stage IV. More aggressive and harsher chemo is generally used for Stage IV. This link list the usual side effects of FOLFOX.

http://www.macmillan.org.uk/cancerinformation/cancertreatment/treatmenttypes/chemotherapy/combinationregimen/oxaliplatin5fu.aspx


Yes, many studies. Terminology can be tricky. 50% of all Stage III have recurrence. So 50% of Stage III could potentially be cured by surgery alone. Doctors include this 50% in their 'survival stats'.
The FOLFOX4 regimen increased the probability that a patient would be alive and disease-free at 3 years by 5.3%.


I would find out if she's had a PET scan and if not, ask for one. Spots on her liver and lung at age 90, if cancerous, would strongly suggest she's more sick than you think. Chemo only cures 3 kinds of cancer. Two are children's cancers and one is a hodgkin's lymphoma. The rest, it can shrink, make 'disappear' but eventually regrow.

Chemo is poison and has so many side effects. One of our members went into cardiac arrest and is a young person!

Stage IV Colorectal Cancer
When diagnosed as advanced metastatic disease, colorectal cancer (CRC) is traditionally associated with a poor prognosis, with 5-year survival rates in the range of 5% to 8%. The actual survival rate has remained unchanged over the past 35 to 40 years. However, during the past 5 years, significant advances have been made in chemotherapy treatment options, such that improvements in 2-year survival rates are now being reported — median survival rates of 21 to 24 months in patients with metastatic disease.
Cleveland Clinic

I would only consider mom to be 'advanced' if she has spread to her liver/ lungs and not the one lymph node. Still, if only 3 to 5 people out of 100 live longer due to chemo, I'd take the chance and not give chemo to a 90 year old woman.

Push for a PET scan. That would clear up the issue of spots on the liver and lung. I wouldn't make any decision until I knew just where the cancer IS and IS NOT. A lymph node can many times be surgically removed if there is no other cancer.

Again, I'm a bit anti chemo because of all my side effects 7 1/2 years past my last treatment AND I wasn't given chemo after my liver resection because it wasn't deemed necessary or known to be helpful. My onc said if I took FOLFOX again 'I'd be putting you in a wheel chair for the rest of your life'.
Stage III cc surgery 1/7/09. 12 tx FOLFOX
Stage IV PET = 1.5cm liver met. HR 4/11/12

14 years since dx and 11 years post liver resection.
Pronounced CURED and discharged by onc

“O Lord my God, I cried out to You, And You healed me.” Psalms 30:2

jhocno197
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Re: 90 year old mother in law --FOLFOX

Postby jhocno197 » Mon Feb 06, 2017 3:06 pm

dianetavegia wrote:FOLFOX is generally given to patients who are Stage I to Stage III and not Stage IV. More aggressive and harsher chemo is generally used for Stage IV. This link list the usual side effects of FOLFOX.

http://www.macmillan.org.uk/cancerinformation/cancertreatment/treatmenttypes/chemotherapy/combinationregimen/oxaliplatin5fu.aspx


Yes, many studies. Terminology can be tricky. 50% of all Stage III have recurrence. So 50% of Stage III could potentially be cured by surgery alone. Doctors include this 50% in their 'survival stats'.
The FOLFOX4 regimen increased the probability that a patient would be alive and disease-free at 3 years by 5.3%.


I would find out if she's had a PET scan and if not, ask for one. Spots on her liver and lung at age 90, if cancerous, would strongly suggest she's more sick than you think. Chemo only cures 3 kinds of cancer. Two are children's cancers and one is a hodgkin's lymphoma. The rest, it can shrink, make 'disappear' but eventually regrow.

Chemo is poison and has so many side effects. One of our members went into cardiac arrest and is a young person!

Stage IV Colorectal Cancer
When diagnosed as advanced metastatic disease, colorectal cancer (CRC) is traditionally associated with a poor prognosis, with 5-year survival rates in the range of 5% to 8%. The actual survival rate has remained unchanged over the past 35 to 40 years. However, during the past 5 years, significant advances have been made in chemotherapy treatment options, such that improvements in 2-year survival rates are now being reported — median survival rates of 21 to 24 months in patients with metastatic disease.
Cleveland Clinic

I would only consider mom to be 'advanced' if she has spread to her liver/ lungs and not the one lymph node. Still, if only 3 to 5 people out of 100 live longer due to chemo, I'd take the chance and not give chemo to a 90 year old woman.

Push for a PET scan. That would clear up the issue of spots on the liver and lung. I wouldn't make any decision until I knew just where the cancer IS and IS NOT. A lymph node can many times be surgically removed if there is no other cancer.

Again, I'm a bit anti chemo because of all my side effects 7 1/2 years past my last treatment AND I wasn't given chemo after my liver resection because it wasn't deemed necessary or known to be helpful. My onc said if I to


Folfox is frequently given to stage IV patients. Stage I and II often do not even have chemotherapy.
DH - dx Dec 2014, stage IV with bladder & peritoneal involvement - non-resectable
Colostomy
FOLFOX failed
FOLFIRI failed
Tumor actually distending pelvic skin
Not a candidate for last-ditch pelvic exenteration
Stivarga finally begun 2/19/16
Tumor growing/fungating
Lonsurf started 11/18/16
Died 3/10/17

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dianetavegia
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Re: 90 year old mother in law --FOLFOX

Postby dianetavegia » Mon Feb 06, 2017 3:13 pm

FOLFOX with Avastin is frequently given to Stage IV because Avastin starves the tumors by cutting off blood supply.

Chemo for Stage II cancer is dependent on IIa, IIb, IIc. It is not ruled out for aggressive Stage I's either.

Not All Stage II Tumors Are Alike

Though stage II tumors are grouped together, there are subgroups that appear more likely to relapse and may, in turn, derive more benefit from adjuvant chemotherapy. The 5-year survival for people with T3N0 tumors is 85% versus 72% for those with T4N0 tumors, yet these are both classified as stage II. A tumor may have other high-risk features that may predict a higher chance of recurrence. While the presence of these high risk features can prompt a discussion between the physician and patient about the use of chemotherapy, most clinical studies have found only small improvements, if any, in survival (2%-5%) with the addition of chemotherapy in stage II disease. Therefore, each person must make his/her own educated decisions regarding treatment based on the information available.

It is also important to note that stage II tumors have previously always been considered as just another phase of the same cancer and that stage II cancers just have disease extent that is between stages I and III. More recently, experts think it is possible that stage II tumors are genetically different than stage III tumors, which may explain the very different responses of these tumors to the same treatments. While we have no definitive answers to this question, it is something to consider when looking at the various features of stage II and III tumors that predict recurrence and treatment benefit.

High Risk Features

As already noted, the depth of invasion (T3 vs. T4) is one high-risk feature. People found to have a bowel perforation or obstruction, at the time of diagnosis, are also at higher risk for recurrence. The "grade" of the tumor can also affect recurrence risk. When the tumor is examined by the pathologist, it is assigned a "grade", which tells how abnormal the cells appear. The more a tumor cell looks like a normal cell, the more well-differentiated it is. Grading is broken down into three groups:

Grade 1: also called well differentiated. Cells appear the most similar to normal colon cells
Grade 2: also called moderately differentiated.
Grade 3: also called poorly differentiated. Cells appear the most abnormal and tend to grow more aggressively.
Grade 3, or poorly differentiated cells, are considered high risk. The pathologist may also identify invasion of the blood vessels, lymph nodes or nerves by cancer cells (lymphovascular or perineural invasion), which is considered high risk.

Prior to surgical removal, a blood test to detect CEA (carcinoembryonic antigen) is done. CEA is a substance produced by the cancer cells, called a tumor marker. Elevated levels (CEA>5 ng/ml) prior to surgery are thought to infer a higher risk of recurrence.

Lastly, the number of lymph nodes examined can put a tumor in the high-risk category. If fewer than 12 lymph nodes are removed and examined, the risk of recurrence is higher and the overall survival lower. In studies, the 5-year overall survival (OS) correlates to the number of lymph nodes removed (1-7 LNs = 49.8% OS, 8-12 LNs = 56.2%, >12 LNs = 63.4%). It is not clear if this is because examining more lymph nodes in these patients would have found their tumors to be stage III, or because the surgical removal was less than complete, or perhaps both. We don't know for sure, but this finding often drives the decision to use adjuvant chemotherapy in patients with fewer than 12 LNs removed.

Studies have found that the presence of two or more high-risk factors is most likely to increase the risk of recurrence. In one study, patients whose stage II tumors did not have any high-risk features have been reported to have a 5-year survival rate of 95%. So as you can see, there are many things to consider when deciding whether or not to treat with adjuvant therapy.

Unfortunately, all of these "high-risk" features suggest an increased risk of recurrence and/or decreased survival. However, studies have not been able to show that the addition of chemotherapy provides any benefit, and professional guidelines are not in agreement. Two groups do not support the use of adjuvant chemotherapy for stage II disease, even in the presence of high-risk features, due to the very small benefit derived (2-5%) from this potentially toxic therapy. Meanwhile, a third professional group suggests that adjuvant chemotherapy should be considered for patients with high-risk features. Patients and physicians are often not comfortable choosing to forgo adjuvant therapy. Reviews have found that more than ¼ of patients with stage II disease receive adjuvant therapy, despite a lack of evidence that it improves survival.
Stage III cc surgery 1/7/09. 12 tx FOLFOX
Stage IV PET = 1.5cm liver met. HR 4/11/12

14 years since dx and 11 years post liver resection.
Pronounced CURED and discharged by onc

“O Lord my God, I cried out to You, And You healed me.” Psalms 30:2

rp1954
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Re: 90 year old mother in law --FOLFOX

Postby rp1954 » Mon Feb 06, 2017 6:40 pm

fordodo wrote:...She had surgery, recovered and has been on 5FU alone since September. This past scan a lymph node grew from 4.7 to 5.5;;;

You meant 4.7-5.5 mm or cm, centimeters?

Several things here. Some stage 4 people in the US have been treated very successfully with lower dose Xeloda + Celebrex (see Maia's post's on the Excel/ADAPT protocols and Dr Edward Lin). Whiteswan's mother has used cimetidine and PSK for stage 3 CRC, where cimetidine (CA199) and PSK (CEA) are actually targetable ingredients by blood or tissue tests for stage 4 CRC. Also IV vitamin C tends to improve inhibiton and kill in some of the same type of CRC cell lines as oxaliplatin and Avastin. Older people typically don't tolerate oxi- very well. We've used all these off label ingredients, together with even more potent supplements, for stage 4b without any oxi-. Ever.

While IV vitamin C is usually on somewhat more frequent schedule, say 1, 1.5, or 2x a week vs 2 weeks for oxi-, the side effects are night and day different. With IV vitamin C, a cancer patient often has a "burst of energy" or for hours or days and has few(er) side effects from Xeloda. It's a lot different for oxi- (harder), although I would question the durability of any infusion program for a 90 yo.
watchful, active researcher and caregiver for stage IVb/c CC. surgeries 4/10 sigmoid etc & 5/11 para-aortic LN cluster; 8 yrs immuno-Chemo for mCRC; now no chemo
most of 2010 Life Extension recommendations and possibilities + more, some (much) higher, peaking ~2011-12, taper chemo to almost nothing mid 2018, IV C-->2021. Now supplements

fordodo
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Re: 90 year old mother in law --FOLFOX

Postby fordodo » Mon Feb 06, 2017 10:21 pm

Thank you so much! Mm is what is was referring to.
I think she has not had a pet scan but am making certain since she also has stomach pain which they are guessing is referred pain from an impinged disc but who really knows. The Vitamin C infusions are fascinating...will most oncologists look at you as if you have 6 heads should you happen to inquire about that? :?
Lastly, is there anyone on the forum in this age range who has endured Folfox? Knowing my mother in law and all her determination she will likely decide to pursue the 65 dose of Folfox. Her appointment with her oncologist is tomorrow to decide.
cos

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Re: 90 year old mother in law --FOLFOX

Postby KElizabeth » Mon Feb 06, 2017 11:09 pm

fordodo wrote:Folfox's neuropathy issues make me question if its worth it for her to try? A different doctor we know mentioned the mini dose of 65 to access tolerance and this seems somewhat more reasonable. I have also wondered if pushing for Folfiri is a better option. I am an avid researcher and believe that sometimes the best advice you can receive is from those who have been through it...so I am turning to all of you in hopes you can offer opinions and advice. My Mother In law is an amazing woman and the last thing I want is for her to suffer. Thank you in advance!

I've done both FOLFOX and FOLFIRI, and I can't say I'd recommend either to a 90 year old. I think 5 to seven doses of FOLFOX would probably be tolerable but I would stop there to avoid the neuropathy that will set in as the Platinum builds up in the body. Folfiri is different but not easy. Diarrhea and low white count are huge concerns with this cocktail. I have painful frequent episodes of diarrhea that disrupt my life. I require Neulasta to keep my white count up, but they cause irritating bone pain and I have sores in my mouth and sores in my nose that cause me daily pain. So I guess I'm saying that I can't say I'd recommend either chemo cocktail, but if I had to choose, I'd choose half a course of FOLFOX.
Female age 39- ,2 teens.
Colon Cancer - DX March 2013
Age 34 at DX - Stage III B
Resection surgery -May 2013
FOLFOX - June, 2013 to Sept, 2013
5FU plus leukavorin Sept, 2013 to Dec, 2013
METs liver and lungs discovered Sept, 2015
KRAS - MSS
FOLFIRI plus Avastin - Sept, 2015 - July 2017
Durvalumab and Cediranib Sept 2017 Dec 17
FOLFOX with desensitization protocol - current

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Maia
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Re: 90 year old mother in law --FOLFOX

Postby Maia » Tue Feb 07, 2017 12:24 pm

Do you know if it's MSS or MSI?

fordodo
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Re: 90 year old mother in law --FOLFOX

Postby fordodo » Tue Feb 07, 2017 1:15 pm

No I don't know.
I'm assuming it's worth asking? I'm going to go look it up.
cos

fordodo
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Re: 90 year old mother in law --FOLFOX

Postby fordodo » Tue Feb 07, 2017 6:11 pm

My update:

Oncologist visit took place and my husband did not have the chance to ask about MSI. However, my mother in law's report was incorrect in that two lymph nodes grew not just one. The growing was centimeters and not millimeters. Two centimeters I believe. He recommended Folfox 65 vs Folfiri. She will start next week I believe. I am so so nervous for her. :(
cos

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Re: 90 year old mother in law --FOLFOX

Postby weisssoccermom » Tue Feb 07, 2017 6:29 pm

Have you asked the oncologist if he/she would recommend this protocol for his/her mother?? This is just me throwing this out, but I wouldn't put any 90 year old through that type of chemotherapy. I wouldn't have even put her through infused 5FU....and I'm surprised that the oncologist didn't recommend Xeloda for her. WHY put a 90 year old through the invasive procedure of getting a port when another viable option was available? I don't know, but to me, this oncologist isn't looking at your MIL as an individual who happens to be elderly but rather as just another patient....and he/she is just following the 'standard of care' protocol.

I'm guessing because of her age, your MIL is the type that just goes along with anything and everything a doctor says.....that's just the way people of that age were brought up. That's doesn't, however, mean it is correct. I only was on oxi for one infusion because I had such severe reactions to it. My onc didn't even want me to take it but I insisted. Many people have side effects from that drug that is more than just the long-term/permanent neuropathy. Personally, I would get another opinion from a different oncologist and ask him/her what he/she would do if this was his/her mother. I'd bet you'd get a different answer.
Dx 6/22/2006 IIA rectal cancer
6 wks rad/Xeloda -finished 9/06
1st attempt transanal excision 11/06
11/17/06 XELOX 1 cycle
5 months Xeloda only Dec '06 - April '07
10+ blood clots, 1 DVT 1/07
transanal excision 4/20/07 path-NO CANCER CELLS!
NED now and forever!
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fordodo
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Re: 90 year old mother in law --FOLFOX

Postby fordodo » Tue Feb 07, 2017 7:48 pm

weisssoccermom--
I agree with you which is why I am fearful.

However, my Mother in Law is an eternal optimist who is stronger than many 30 year olds I know. As a result, she raised four kids who are the same in strength and determination and they have urged her to fight on. If it were my parent, I think I would explore every other option not as toxic,stay with the 5FU she has been tolerating (she cannot tolerate the leucovorin portion) and have a party every day she is alive and well.
I suppose I am hoping the lesser dose is merciful for her.
I am super troubled by the fact that she has a ton of pain right now but the doctor is saying a PET scan will not tell much more than what they know.
Her recent CT scan last week did not show any reasoning for extreme pain but isn't it logical that growing cancer could cause pain?
Thank you all for weighing in...
It's comforting to have educated people listening.
cos

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Re: 90 year old mother in law --FOLFOX

Postby bitchslapped » Tue Feb 07, 2017 9:02 pm

Hi, Welcome to the forum. Am posting a link from cancer.net, a sister site to the ASCO (American Society of Clinical Oncology). It does provide some help w/questions to docs, things to consider.

http://www.cancer.net/navigating-cancer ... der-adults

The living situation of the elderly is very important. Does your mil live alone? Expect the possibility that her needs/care will increase on any standard chemo regimen as she manages any of the side effects that may occur. Who will accompany her to her treatments? Cancer is a family disease in that the patients needs plenty of support.

I agree w/others; she needs a PET scan to know extent of disease. I don't understand how any treatment plan can be recommended w/o a full picture of what is going on. Oxaliplatin w/b crossed off my list, maybe FOLFIRI @ 65% dosage if she wants chemo @ all. I'm not a fan of chemo in this age group, only b/c of toxicity, care issues, quality of life vs % of benefit. You might consider asking the onc about metronomic low dosing oral chemo described in the following links here on CT:
viewtopic.php?f=1&t=49549
viewtopic.php?f=1&t=56512&p=446892&hilit=metronomic#p446892
Low dose oral medication such as Xeloda &/or others on a regular, continual basis, vs chemo port surgery for access of infusions & biweekly infusions may be something to research & discuss w/the onc.

If there is a major cancer center in your vicinity, that w/b a good place to get another opinion. I think you need another opinion regardless. Your mil has the right to all of her reports, scans, labs etc. Recommend keeping a notebook for reference. Maybe something you could do for her if she doesn't mind you having access to her medical info.
Our input can only be based on her age mostly & what little info you currently have. Don't be afraid to tell her onc that she would like another opinion. They're used to that.

To Diane's point re: doctors. I remember years ago one of my primary care docs developed cancer. I can't remember if it was pancreatic or other gastric type. He must have been in his late 40's @ the time, maybe early 50's & he did refuse all treatment.

I recommend all throw rugs be removed from her residence. They are a trip hazard. Understand chemo is a toxic poison to the system. That is why there are breaks in between cycles. If you notice any cognitive differences or other slights changes, don't ignore them. Chemo side effects can be cumulative in the body, especially neuropathy. It can also be difficult for our elderly to manage bowel issues. I really hope someone is there with her to help.

There is a search box tool @ the left top of the page. You can enter key words to perform searches for specific topics you want to read more about. I also recommend adding a signature as others have done as a quick reference for others to read in providing input. If you check my sig you will see that I have been a caregiver twice, DM, DH.

You sound like a loving, respectful dnl. Nice to see.

Best Wishes
BS
DSS,35YO,unresect mCRC DX 7/'14,lvr,LN,peri,rib
FOLFOX+Avstn 4 Rnds d/c 10/'14
Stent 9/'14
FOLFIRI+Avstn 10/'14
Gone From My Sight 2/20/15
Me:garden variety polyps + precancerous polyp, diverticulitis
Carergver x2 DH,DM dbl occupancy,'03-'10
DH dx 47YO mCRC,'04-'07, lvr, billiary tree fried x HAI
DM dx CC 85YO,CC,CHF,stroke,dementia,aphasia


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