laurkcp
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laurkcpSpectator
Gavin and Marion,
Thanks for your reply and well wishes. It’s just so hard to watch her lie around all day when she used to be so active. We go to the onc today.
Lauren
laurkcpSpectatorKris,
Fingers crossed! Hope you are feeling ok. We are headed to fox chase today to see if mom can get more chemo. Hope you weathered the storm ok.
Lauren
October 27, 2012 at 5:40 pm in reply to: Bilirubin, Alkaline Phosphatase, Aspartate Aminotrans #65846laurkcpSpectatorI have added your husband to my prayers. His elevated numbers are probably a direct response to the liver working overtime. The chemo is processed through the liver so that can elevate his numbers.
laurkcpSpectatorChristine,
My mother (79) was also diagnosed with CC in June. Her tumor is wrapped around major vessels so surgery is ruled out. I am also an only child and I lost my father to lung cancer 5 years ago. I know how hard it is. Mom is on oxiliplatin/F5U every 2 weeks for the last 5 rounds, but she is very fatigued and also has bowel issues. I too wonder if it is chemo or cancer related.
The docs cant keep them on certain chemo drugs long term due to their toxicity, but I was told of maintenance type chemos that they can stay on.
Our lives have become all about what ifs. I try not to think too far in advance. It’s too stressful.
Best,
LaurenlaurkcpSpectatorLindsy,
When my mom became jaundiced, they told her an internal stent was not possible due to the location. They said that if chemo did not lower the billirubin, an external drain would have to be used. Is that an option for her? It’s not a great option, but at least it could make her feel better.
I feel your pain. It is so hard to watch someone you care about be in this situation.
Best,
LaurenOctober 21, 2012 at 11:51 pm in reply to: Bilirubin, Alkaline Phosphatase, Aspartate Aminotrans #65843laurkcpSpectatorEDH,
I was Referring to alk phosphate. What I’ve experienced with my mom is that I have to go with the onc’s reaction. If they were not concerned, then neither was I. Their issue with my mom was more with her rising bilirubin. Cancer and chemo makes bloodwork whacky.
Lauren
October 20, 2012 at 1:48 am in reply to: Bilirubin, Alkaline Phosphatase, Aspartate Aminotrans #65839laurkcpSpectatorWhen the liver is stressed, i.e. blockage of a bike duct, tumor, etc, the liver enzymes go way up. It is sort of expected. Once bilirubin rises above 4, we were told they must intervene by putting in a stent or external drain.
My mom’s was as high as 1400, but after 4 rounds of chemo it dropped to 400. The ONC was thrilled and said that since chemo is processed through the liver, her numbers would be way off. I think it is expected for someone with CC.
Hope that helps.
laurkcpSpectatorI am sorry to bread of your husband’s passing. When my dad was dying, our rabbi told my kids that the souls of people are in butterflies and every time you see a butterfly, it’s the soul saying hello. We all have been comforted by that. Even after 5 years, when a butterfly comes around, one of us will say it’s Grandpa and it always warms my heart.
Lauren
laurkcpSpectatorThanks Percy. I appreciate it.
laurkcpSpectatorYou live fairly close to Johns Hopkins. They have an excellent reputation for CC. I live in Philly and I take my mom to Sloan Kettering in NYC for her scans and the onc there calls the shots. She receives chemo close to home. As the doctor put it to us, anyone can dispense chemo. It’s the skill of a surgeon or radiologist that is really important where you go.
laurkcpSpectatorThank Lainy. I think she will stay here for the next few rounds and then do the “maintenance” chemo in FLorida and she can hire someone to help her. It’s so hard to believe how someone can go from fiercely independent to dependent in such a short time.
laurkcpSpectatorMy deepest sympathies. I lost my Dad in 2007 and my mom was diagnosed with CC in June. I feel your pain.
laurkcpSpectatorThe waiting game is the worst! It has however, forced me to appreciate the here and now. Every time I think too far into the future, I just stop myself and refuse to go there. You really learn to take it day by day and not worry twice. I will say I am much less anxious. Just trying to live in the moment. The reality is none of us know what will happen to any of us.
I think it is important to be realistic and educate yourself.
Keep in touch
Lauren
laurkcpSpectatorLindsy,
My mom just finished four rounds of the same combination. Mom was never in pain, but it took time in between the rounds for her to recover. My mom is 79. After her first round, she was wiped. DIdnt get out of bed for two days. BY Day 11 she started to feel better only to start round 2 in 3 days.
For my mom, we only know that her bilirubin count is dropping and her liver function tests look better so the docs use that as an indicator that things are progressing in the right direction. If your MIL’s blood counts are too off, they will postpone treatment or reduce the strength. I will say that chemo does really weird things to blood counts and the cancer is no better. If the docs were not worried about her blood counts then I did not either.
Chemo is cumulative, but we did see that each time was so different as to how she felt. It has been unpredictable. I would try to encourage her to eat or try Boost or Ensure just for the calories. Is she nauseous? Mom takes something for that and that allows her to eat. ALso, small, frequent meals may be easier to tolerate. My mom definitely pushes herself to eat as she wants to be able to continue treatment.
She will have a scan next week to see if the chemo worked.
Best of luck,
LaurenlaurkcpSpectatorGreat news. Fingers crossed!
Lauren
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