Cancer Survivors Network - discussion - Comments

friends post

cww71964 — Tue, 14 Feb 2012 14:03:12 -0500

Hi Fox,

I am not 100% sure but I think that section shows recent friend posts.

form question

MikeK703 — Tue, 14 Feb 2012 14:02:10 -0500

that appears to be from your "friends" list. I guess when you pick friends, it puts info about their input in that blue area. My blue area doesn't have anything like that. I guess I'm friendless!
Mike

Happy For you

alutiiqmom — Tue, 14 Feb 2012 13:58:02 -0500

Hi Michelle-

I am very happy to hear that you are at work today and doing better. Enjoy Valentine's with your children. Sarah and I continue to include everyone on this site in our daily prayers. Let us know how you are doing.

God Bless you-
Edna

Journey well

ratface — Tue, 14 Feb 2012 13:50:03 -0500

May all your time away from here be filled with peace of mind. Godspeed to you! and thanks!

Love the shirt

ratface — Tue, 14 Feb 2012 13:47:09 -0500

Got to love Valentine when you are five. All those little cute valentine cards and the candy, and girls in pig tails, Oh wait, went to far back, but what a great age and moment for you. Enjoy!

You are so in my thoughts

shelbymae — Tue, 14 Feb 2012 13:31:48 -0500

You are so in my thoughts and prayers today.
I reached my one yr mark of being in remission Oct. 2011. I received Rituxan and Fludura as my treatment. I was diagnosed with follicular NHL stage 4 low grade indolent and it was in my bone marrow. I pray to God I never have another bone marrow test...the pain was so intense and felt like it lasted forever!!!!!
I had such a wonderful support system going through my chemo/treatment I had at least one family member with me everytime I sat there and had the poison being pumped into my body.
I am having so many health issues after the treatment and that is why I chose to reach out to see if I could find someone going through the same thing. I am surprised to see so many fellow cancer patients that have similar issues. It has brought me comfort to know I am not the only one.
Thank you for welcoming me to the group...yes I can feel the warmth/kindness and caring just reading the emails posted...what a group. Thank you for taking the time to answer my questions.
Please when you feel like it let me know how you are doing.
shelbymae

This is one of the cardinal rules of gynecology

longtermsurvivor — Tue, 14 Feb 2012 13:28:14 -0500

If you have a period disorder, and thickened endometrium on ultrasound,and are 47 years old, you should have a biopsy of the endometrium BEFORE any hysterectomy is performed.

Best regards

The pump wire is something

gestubbe — Tue, 14 Feb 2012 13:18:29 -0500

The pump wire is something you will get used to easily. Best is to take it one day at a time and to remain positive even though at times it seems hard to. I believe being positive help one fight the cancer we battle.

Chromophobe

Texas_wedge — Tue, 14 Feb 2012 13:13:15 -0500

Anyone here who has chromophobe which has gone sarcomatoid?

Signed and passing it on

gestubbe — Tue, 14 Feb 2012 13:07:29 -0500

Signed and passing it on

congrats

vazquez7 — Tue, 14 Feb 2012 13:03:09 -0500

wonderful news and congrats to you. I just hit the 5 year mark as well and being released from the oncologist next week. It is a good feeling and I am happy for you.

Excellent News!

ValerieMo — Tue, 14 Feb 2012 13:00:59 -0500

Awesome! Congrats! :)
Valerie

Reply to JRoper525

MsD82 — Tue, 14 Feb 2012 13:00:18 -0500

Hi J-

did you also get a PET Scan with your CT STUDY? Hope the doctor had some hopeful recommendations, even if he/she was not happy with the CT results. I find this whole thing (disease, diagnosis, treatments, body experiences, emotional and mental ups and downs) quite an adventure. I'm still hanging in there and feeling quite good, despite interruptions to my life's original plan.

My ampulary cancer was diagnosed 2/09, and, as I said, I'm pretty healthy right now. People say I look better than ever, and I feel it. I feel lucky. I have been pretty sick on and off, for 3 years, but was very healty before this disease. In addition to original diagnosis and treatment (feb-July, 2009), I've had 2 bouts of pancreatitis post Whipple, and now 2 blooms of metastasis....one in supra scapula lymph node (2010)...and the second was mets to left lower lung 2011). Pacreatitis is treated with no food or beverages, only IV FLUIDS and antibiotics, then gradually begin low fat diet, small portions, and advance to what you tolerate. My cancer mets are treated ith more chemotherapy (gemzar and Xeloda, or oxaliplatin and Xeloda). Now my lung mets is being treated with Radiation Therapy.

(What ive learned:
1. About eating: Be sure to eat low fat, and take pancreatic enzymes to avoid excess work by your small pancreas...I take Creon, 3-5 per meal to reduce risk of more pancreatitis in future..very painful...Also, you can stop eating for 2-3 days, just take clear juices and broth, and crackers, if you THINK you have early signs of pancreatitis. Be sure to call MD (i call my primary care MD) if you have very high mid-abdomen and/or back pain, and you only need a lab test to rule out pancreatitis. Dont wait around and suffer. Things can get toxic pretty fast with pancreatitis. I also purchased Optimental supplement directly from Ross Nutritionals online (expensive at ~$300/case of 24), mix 1 can with ice and 1/4 cup orange juice..and sip over about 1 hour. It doesn't require pancreatic enzymes to digest the fat or protein in it, and can help keep your strength up when you can't eat.)

2. About the cancer, I was told early on that mine is agressive, I am relatively young with a teenager and husband who love me, so I ask my doctors to be agressive with early diagnosis of any problems. I've educated myself about the symptoms, tests and treatments...and I have several doctors to confer with (primary care, oncologist, specialist GI Oncologist, pain management specialist (I've had 2 nerve blocks for excruciating pain...they helped), and early on, the surgeon and GI specialist for diseases of the pancreas.

3. Times are good between symptommatic disease. As my therapist says, to remind me to get out and live well, "You're not dying yet!"

Best wishes, hope you had a good care plan for your updated diagnosis. (PS, CT SCANS alone did not help my doctors locate early disease. The PET/CT combination was needed.)

MsD82

Hi Gary, I am sorry I wont

very worried husband — Tue, 14 Feb 2012 12:56:13 -0500

Hi Gary,

I am sorry I wont be of much help, but was wondering is your mom getting any chinese Traditional treatment? Where about in china she is getting treatment? Pm me if you need a v v good TCM doctors address.

Irinotecan

Kathryn_in_MN — Tue, 14 Feb 2012 12:54:42 -0500

I was on Irinotecan for over a year. I got both the early and late onset diarrhea from it. Usually the late onset doesn't hit until day 10 or so, but maybe earlier for you? Or maybe a delayed reaction for the early - if you get pre-meds that constipate you to start. On FOLFOX, I'd be constipated for days 1-4, and the damn broke lose with awful diarrhea on day 5.

Be sure to follow the oncology/chemo directions for using Immodium, and NOT the instructions on the box.