Need some feedback

Mary,
My “uneducated” opinion with your situation would be similar to what I wish we would have done for my father. He was dx in July of 07 and had a resection August of 07, and did well until June 08, when they found mets on both his lungs. He felt great, so we left them alone. By October the mets had grown and multiplied, and although my dad still felt pretty good, the Dr suggested Xoleda(a oral form of chem). In my dads case after starting the Xoleda, he went down rapidly. He developed very strong pain in his abs that at that point never left, fatigue, nausea, extreme weakness. This cancer has a mind of its own and never any rhyme or reason, but in my dads case, I wish we would have left the treating of the mets alone, because the Xoleda didn’t work, and it caused more problems. I know Xoleda has had success, so I don’t want to sound negative, but I thought you would want to know our experience.
I thinking good thoughts your way
Barbara

Hi Mary,
I have had many of the same experiences that Louise and Jamie have had. I was dx nearly 2 years ago (08/07) and at that time given a few weeks to live.

I was hospitalized at first get un-jaundiced, then had radiation and chemotherapy. The radiation zapped the tumor to 30% of it’s original size. I was then a candidate for surgery. Unfortunately, the resection was unsuccessful. In the meantime, I continued to work up until June of this year.

I’ve been on Xeloda all this time, now on Oxiliplatin, and was on Gemzar. I have mets to the lungs. But I still feel well, although I have little stamina and feel dragged out. I also have a lot to live for, with kids ages 16, 21, 22. My goal is to see them all graduate from college. I am a single parent, so it is even tougher than before to make ends meet. But with God’s blessing, I know I can last a few years more!

Mary,
I won’t argue with your decision, but I would like to share my experience. I am also a 54 year old female diagnosed 2 years ago. With my first cycle of chemo, I had Gemzar and Cisplatin. I did experience a lot of nauseousness and exhaustion, but I continued to work part time, did water aerobics when I could, and dealt with other side effects, but with 6 months of treatments, they hoped to reduce the tumor enough to operate. When the scan came back after the 6 months, there was no sign of the tumor. Remission was the word. I returned to work full time but had other issues, so a jujenostomy was done in March 2008. The scan in June showed that the cyst on my ovaries had gotten large enough to be of concern, so a hysterectomy was scheduled for July 15. Though the cyst turned out to be metastasis, they thought they got it all. By September, jaundice was returning, so I had more chemo (same cocktail) while a specialist worked to get stents in place in both branches and the primary bile duct. Again in Dec. the scan showed no tumors. There was a spot where all the cancer started that they could not determine if it was scar tissue or precancerous cells. The options were: 1. wait and see. 2. operate to get a pathology report, but risky. or 3. radiation therapy. I went with radiation therapy.

During the second cycle of chemo, I had almost no nausea and some exhaustion, but not as much as the first time around. Seems that the Gem-Cis combination tends to push women into menopause. Their effect on me the second time around may have been mitigated by the reduced hormonal levels of having been through menopause. I worked full-time through the radiation therapy and did fine. In the meantime, I have had the chance to see my first grandbaby and I’m really hoping to see my youngest 2 sons graduate from high school. One will be a senior this year and the youngest, next year. At the moment, I am in remission, working full time, hair growing nicely, energy levels are rising. Life is good and I have a lot I want to live for. I still plan on fighting for every minute I can get.

Reality, all of us have limited time, but most people don’t know the time limit. Yes, some days are still not so good, but I had good days and not so good days before I was ever diagnosed with anything.

My Mom chose not to fight with chemo, radiation, or surgery. At the age of 85 almost 86, her oncologist didn’t expect her to last a year. That was in 2006. Yesterday, she saw her oncologist again, and he said she was doing well considering all the other details. However, he did refer her to hospice yesterday. Still, without the medical fight, she is still going. The pain is now more frequent and the mets to the lungs as well as growth of other spots indicate she probably doesn’t have many weeks left.

Count on one thing. You have the right to make your choice and we will all support your decision.

God bless you!
Louise