willow
Forum Replies Created
-
Posts
-
Yes, this is a good site to help you through. Sounds like you’ve got your Mom at a great place for treatment. Marion’s advice to take this “one day at a time” is good because it’s too hard to predict and can be a roller coaster. These seem like canned sayings but I really understand now why people with serious conditions use them! Best to your dear mother.
WillowThe new chemo was making some kind of acne or rash on her scalp. Her hair is in the process of coming out and the onc said that the Taxol affecting hair follicules can do that. So, this is why she was referred to a dermatologist. While there, my sister asked the dermatologist to look at a red, unbroken and non-symptomatic flat area of skin on her right upper abdomen about size of a dime which is at the insertion site for two biopsies done about 17 months ago (Aug ’12). The dermatologist was more concerned about this than the scalp rash so she took a biopsy of it. Waiting for results and to get stiches out.
Meanwhile the derm dr RX a special shampoo for the scalp and my sister is trying to adjust to losing lots more hair daily. She is not ready to shave it all off. She has two beautiful new wigs which she’s starting to wear in public and some stylish knit hats. Still, its hard for her to feel strong emotionally with outwardly visible signs of this disease including the skin lesion,scalp rash and hair loss.
I am getting more scared about the slow progression and unknowns of her CC. Hard to know if this taxol is going to help because it hits her blood counts hard so often doses are reduced or infusion is delayed a week altogether. Her fatigue is increasing (mainly Chemo related I assume) and she seems to be in pain now though she doesn’t take much at all for that outside of occasional Tylenol. (She is trying to go easy on liver by not taking lots of Tylenol). I’m thinking maybe she should have an RX pain med be on hand just in case. Talked to her about value of staying out of pain vs risk of taking more meds. I love her so much and her son needs his Mom to raise and love him! Hoping all this is simply side effects from chemo (and Nupogen shots) and not disease progression.
Willow
WillowTara,
Very understandable that you are scared to have this diagnosis. I am VERY happy to hear you are scheduled for surgery early January and know we are all very glad you have localized, resectable CC. I am also grateful that the radiologist looked carefully at your scan and the ER staff did not just send you home with more pain meds. Your story is so similar to my sister’s (pain under right rib that would wake her up at night.. the Dr assumed gall bladder disease and ultrasound tech found it looked normal but then was extra diligent in looking more carefully at the liver.. ultrasounds are not very good but are the first line screening tool). Seems weird to be so excited for you about your resection surgery when in perspective I’m very sure you would rather have NO cancer and NO surgery, but you are fortunate as this surgery is the best possible treatment known for cc. Healthy Blessings to you and let us know how we can help.
WillowMerry Christmas, Shari!
Thanks for the update… Glad you’re responding well to the chemo! The flu is a draaag! Feel Better!
WillowClare,
What a lovely way to remember your sister Nikki. I’m sure it is very painful to watch her children celebrate without her. She should be here, I agree! Children lift our spirits the way they show and share joy so honestly. What a blessing that your niece and nephew have you! I feel deeply hopeful that your sister is with you all in spirit. Still, there is no sweet story that can change the feeling that she should be there with her children.
Love and hugs,
WillowThanks as always for your diligent sharing of medical articles related to CC. Hope you’re keeping warm and cozy in Scotland this holiday and that your Mum is doing ok. Merry Christmas!
WillowHugh,
That is wonderful to hear how well your wife is doing!
Not sure what to add as far as the blood ork and scans at 3 month intervals. Have a blessed Christmas!Hugh,
That is wonderful to hear how well your wife is doing!
Not sure what to add as far as the blood ork and scans at 3 month intervals. Mage a blessed Christmas!That is amazing, Lisa!!! How did your husband choose that number? I’m keeping you in my prayers for continued stability.
Merry Christmas!
WillowRegina,
I’m keeping you in my thoughts for you to start feeling better. Christmas blessings to you and your sweet daughter!
WillowFeliz Navidad and healthy blessings, Pattimelt!
Let us know what Dr Selby says. Glad you got to consult with him.
WillowSorry to hear your Morher has CC. Its true that if the tumors have spread outside liver or are too close to major blood vessels in liver , resection surgery is not usually an option. On the other hand, there are many who have been fortunate enough to become resectable after good response to chemo and/or other treatments like various forms of radiation.
As for the Gem-Cis chemo cycle: while many have 2 weeks on then one week break, I think your moms Dr may rec a 2 week break be to help platelets and other blood cells recover. To clarify the “immune boosting shots” mentioned above… Even WITH the Neulasta (or Nupogen) shots, my sister still got turned away many times from scheduled chemo for low platelet counts. It is my understanding that the Neulasta and Nupogen shots are for boosting WHITE blood cells, not red blood cells nor platelets. White cells do help you fight infection. Platelets help blood to clot and the only tx for low platelets is to delay chemo for a bit till platelet counts go up Or sometimes get a blood transfusion if they’re critically low. Now that my sister is on Taxol, she gives herself the shots for 3 days in a row following chemo infusion.
Sincerely, Willow
WillowHi DukeNukem,
That’s wonderful news about your latest scan! So nice of your doc to not keep you hanging.
I respect your need for privacy. For many, its natural to protect your loved ones from your anguish and fears and causing them worry. On the other hand, nobody can put on a positive attitude ALL the time. Everyone going through such a life-altering ordeal needs somewhere to vent or ask questions of those walking in similar shoes. I am on the “outside” since it’s my sister who has the cancer. (17 months since diagnosis and she is doing well though stage 4 ICC). There is no way to know what it feels like to have such a condition but I’m doing my best to understand what she is going through and try to give her the support she needs. She doesn’t want emotional drama, so I do my crying privately and regularly. Sometimes I worry about her emotional health because she has not sought a support group or blog, or therapist. How she copes is her personal choice so I simply support her using info and tools I’ve learned from this great discussion group.
As for long term survivors/members of this blog, there are many! Some don’t post often but I am glad a couple of them (Kris and Lisa) have lifted your spirits and given you hope.
Merry Christmas and congrats again on the good news ! Willow
