Seeking comfort

Rachel18

I'd like to say how amazing this network is. I am sure that all the support shared is source of optimism for all - as it has been for me in the case of my sister.
I'd like to post some details on her case and would be grateful if anyone listening can offer some encouraging words.
My sister is 68 years old and was diagnosed with adenocarcinoma endometroid type, FIGO grade 3. cancer in the summer of 2010. She is being treated at one of the bext cancwer hospitals int he world Sloan in NY). She had a total hysterectomy (they removed regional lymph-nodes as well as portion of the omentum) shortly after followed by adjuvant chemotherapy, she then entered trial therapy as well.
All seemed to be going decently until she had a partial bowel obstruction in April (which cleared after a week or so) - they then switched her to doxil(which seems to have taken a toll on her - at one point she had a septic port infection, but than god she came through that). After three months on doxil, she had a promising CT scan which showed that the tumors had shrunk somewhat. The next three rounds of doxil were even harder and that CT scan at the end of those showed increased ascites and carcinomatosis with petrineal thickening, omental infiltration, mesentric nodules, capsular implants and probable serosal implants. It was also showed increaded abdominal, retroperitoneal and left supraclavicular nodes. Also showed mild right hydronphrosis.
The doctor then said he will put her on weekly regiment of single line paclitaxel.
She has been very down since this last scan. She has lost a ton of weight, she has little appetite and complains that every time she eats she either has gas or has to go to the bathroom and much discomfort. She has had a good nutritionist working with her and recently started on homeopathic treatments as well. But she is weak...
She has a lot to live for and we hope that treatment and providence will extend her life significantly.
Have any of you been through something very similar to her experience?
Is it possible that she will get more good years - at this stage in the game? Or is that wishful thinking?

lindaprocopio

Weekly paclitaxol was the ONLY thing that got me into remission.
Hi, Rachel, so sorry that your sister is having such a hard time. I just wanted to let you know that the only chemo drug that bought me a remission was weekly dense dose taxol (paclitaxol), so you can be optimistic for your sister at the treatment regime that she'll be trying next.

PLEASE encourage your sister to EAT and hydrate, irregardless of how uncomfortable it makes her or how unappealing food might be. If her nutritionist can't get her bowels back under control, feel free to email me for the advice I got from my nutritionist (an oncology dietician) that really helped me (lindapro@ptd.net) as this is a critical time for your sister. The saying is "Eat, or your cancer will eat you" and the people I've lost to cancer all stopped eating their last month. Please don't let her do that. My nutritionist suggested Nestle's REPLTE Hi-Protein instead of Boost, but any supplemental drink is better than none now. I also eat 6 small meals daily, so I am NEVER hungry. But I always open my mouth and shovel it in because I know if I stop that I will quickly get in trouble. But she needs her bowels to settle down first and I hope they have her on a non-residue diet to get that under control. Do you know her albumin level? If it drops <2, please bring up TPN feeding.

I am also in the later stages of my cancer, which metasticized to my liver a year ago. (I was diagnosed in fall of 2008 with a Grade 3 endometrial cancer, recurred 1st in fall of 2009, and have been in treatment almost non-stop since). I have outlived my statistical 'expiration date' by almost a year now. Try not to get hung up on life expectancies. None of us, cancer or not, know what may in store for us. I've buried two friends to heart attacks this year, and that really put my 'life expectany' in perspective. None of us is immortal. You just have to LIVE while you're here on this earth and not give up. I've already asked that my obituary read that my last words were "Not yet!" (((Hugs)))

Rachel18

lindaprocopio said:

Weekly paclitaxol was the ONLY thing that got me into remission.
Hi, Rachel, so sorry that your sister is having such a hard time. I just wanted to let you know that the only chemo drug that bought me a remission was weekly dense dose taxol (paclitaxol), so you can be optimistic for your sister at the treatment regime that she'll be trying next.

PLEASE encourage your sister to EAT and hydrate, irregardless of how uncomfortable it makes her or how unappealing food might be. If her nutritionist can't get her bowels back under control, feel free to email me for the advice I got from my nutritionist (an oncology dietician) that really helped me (lindapro@ptd.net) as this is a critical time for your sister. The saying is "Eat, or your cancer will eat you" and the people I've lost to cancer all stopped eating their last month. Please don't let her do that. My nutritionist suggested Nestle's REPLTE Hi-Protein instead of Boost, but any supplemental drink is better than none now. I also eat 6 small meals daily, so I am NEVER hungry. But I always open my mouth and shovel it in because I know if I stop that I will quickly get in trouble. But she needs her bowels to settle down first and I hope they have her on a non-residue diet to get that under control. Do you know her albumin level? If it drops <2, please bring up TPN feeding.

I am also in the later stages of my cancer, which metasticized to my liver a year ago. (I was diagnosed in fall of 2008 with a Grade 3 endometrial cancer, recurred 1st in fall of 2009, and have been in treatment almost non-stop since). I have outlived my statistical 'expiration date' by almost a year now. Try not to get hung up on life expectancies. None of us, cancer or not, know what may in store for us. I've buried two friends to heart attacks this year, and that really put my 'life expectany' in perspective. None of us is immortal. You just have to LIVE while you're here on this earth and not give up. I've already asked that my obituary read that my last words were "Not yet!" (((Hugs)))</p>

Thank you Linda
Hi Linda,
Thank you so much for your response and offering to email me the advice from your nutritionist. I passed on your email to my sisters daughter.
Your attitude is a real breath of fresh air for me and I thank you for that.
My sister did her first taxol treatment two days ago and I hope and pray that she too sees a remission from it.
Regarding her eating, I don't know her albumin level but I do know that she gets dehydrated and had to have IV recently. I spoke to her daughter and she tells me that although she is not eating well, she does eat a decent breakfast every morning and tries to keep herself hydrated - but they very unhappy with the way things are going as she is feeling miserable. To top it all of she has a hernia which is also causing her discomfort.
Her family has now decided to take her to the Block Center for Integrated Cancer Care in Illinois next week as they feel she needs to really build herself back up (as you described) both physically and emotionally. Have you heard of this place? Does it sound like a good idea?
Thanks again and I'll keep you in my prayers for continued good news and good health.

artist49

new here . have some advice for rachel18
I've been reading but not posting. First of all a million thanks to all the amazing ladies on
this discussion board. You have all been an absolute lifeline to me this past difficult year.
I am a patient at Sloan Kettering. Had optimal debulking there in September 2010. Diagnosis
UPSC stage 4B grade 3 with many lymph nodes involved and removed. Have been on a clinical trial in Sloan since early Nov. 2010. 6 cycles 3 weeks apart of avastin, carboplatin, and
ixabepilone. Am now on avastin maintenance every 3 weeks as part of clinical trial. So far,
thank G-d, NED. Am 62 years old, mother, grandmother and artist. Now to Rachel18- your
sister sounds like she has gastrointestinal problems similar to those I had since I began chemo. Over the summer these problems became so intense that my appetite suffered terribly.
My onc suggested I see a gastroenterologist . The Culturelle probiotic that he suggested
solved my problems within 24 hours! These capsules are over the counter and may help your
sister. I guess the chemo had destroyed the friendly bacteria in my GI tract! Contact me if you have any questions. I am in Sloan every third Monday and probably know your sister by sight.

soxgirl823

@ Rachel
It is hard seeing a loved one this way. My mom is going through the same thing. Both my parent's live with me as I'm an only child. Mom is going to be 70. The one thing that she ended up eating and really liking were protein bars. kept her full, she did lose 30 or so pounds as well. She was on the taxol and had really bad reactions to it. Some days took us 8 or more hours to get it in to her. But she was free and clear for 2 years and unfortunately it has now returned. So we are going to go through it again. That is actually how we found it was she had the gas and stomach aches. Good luck and prayer to you. She can beat this too!