jtoro
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Percy- The scan before this stated:
Stable lobulated primary mass between the left and right portal veins measuring approximately 3 cm. multiple stable hepatic low density mestatic lesions.
Stable lymphadenopathy as well as omental and peritoneal carcinomatosis.
Remainder of exam is unchanged compared to 9/20/2011.I realize you are not a doctor, but you understand more about all of this than I do. I never had fatigue and no pain from the nexavar. I had abdominal and back pain when first diagnosed. Now the pain is on my left side under the last rib and throughout my back. I take about 1500-2000 mg of Vicodin a day.
Dr. Lens explained that any little bit of growth in the peritoneal area can cause lots of pain.
So confused and wondering if I should stay on the same drugs or time to switch.
Don’t want to use up my options if not necessary.
JtoroPercy- Dr. Lenz was going to continue the treatment until I talked with him about the pain. He said with this cancer he has to rely on ct’s, bloodwork and the way I’m feeling to make his decision. He took into account how my pain has increased quite a bit over the last two months. This was the report from my last ct: multiple low density liver lesions, which are stable to slightly increased in size. Stable to mildly increased omental modularity, concerning for carcinomatosis. Mild interval increase in mess enteric soft tissue attenuation, which may be related to edema.
Would love your input on these findings. Would it still be more beneficial to continue same treatment.? Is 5fu and oxiliplatin not effective?
JtoroJulie,
I have been on gemzar/xeloda since May 2010. My side effects have been peeling of the hands and feet and pain there also. He lowered my dose of xeloda from 7 days to 5 days and that stopped the problem. In these18 months my cancer has remained stable. I did also lose my hair(wasn’t supposed to) but after six months it started growing back. No explanation. I just
Had a scan Tuesday and everything still stable. I have quite a bit of disease all over: tumors in both sides of liver, lymph nodes enlarged, peritoneal and omentum lesions and glasslike slivers in lungs,but have remained
Stable. Dr. Said I’m exception to statistics and miracle.
I do still cry alot about my circumstances and the effect of this on my children, husband, and family. I am in pain lately offf and on, but take my vicodin. Each day I just move forward. I believe that God is in charge of my journey and he decides when it ends. As my Dr says “God has more for you to do.”
Please stay strong for you and your mom. I hope the xeloda works well for her.
Keep jar of Uttter balm handy and Aquaphore for hands and feet.
Feel free to come back with any questions.
JtoroSo happy to hear that Lauren got a good report. I’ve
Been on chemo for 18 months and it has remained stable. It hasn’t shrunk, but I’ll take stable. I wish the best for Lauren. She will be in my prayers.
JulieMaria,
I wish I could be like you. I do have good days, but many bad days also. I still worry each day that my children will not survive without me. (16 &19)I take the blame as to why this happened. How could I leave my husband, mother, and family? All of these thoughts rush through my head. Then I’m fine for awhile and slip back down. It’s been 17 months and I still go through this. My down times are when I’m feeling ill or sick from chemo. I wish I could change my outlook. Counseling has helped and I have come a long way, but days are still tough for me.
JulieBy the way I am seen at USC Norris. The doctors and nurse practitioners are fantastic. They treat CC so they know what to try and what to expect. I feel like they are rooting for me all of the time. We talk about our kids and what they are doing. I always leave the office getting a big hug. I would highly recommend this hospital.
JulieDevastated,
I have been on xeloda and gemzar for 16 months. I had a scan on
Tuesday and results are stable. Dr. Lenz said “I’m the patient of his that has
Latest the longest on this treatment without having to switch. “. I guess I should be happy with stable, but would like some shrinkage. Just wanted to let you knOw that these drug have worked wonderfully for me and hope they do for you too.Mn,
Yes, I love Dr. Lenz and Taline. After I get the port I will continue with the gemzar and xeloda. I have my six week scan this week and hopefully everything is still stable. I have been having more pain, so we”ll see.
Everyone tells me I will be happier with the port. Thank you for your kind words and reassurance. I pray for all of the families on this board each day.
JtoroGavin and Marion,
Feeling better today, taking the zofran and the compazine.
I was able to keep down soup yesterday and breakfast today. Just don’t understand why I’m getting nausea after all this time.Jtoro
Marion,
It has only happened after my last two chemos. I had a scan four weeks ago and everything still stable. I have another scan in two weeks. I get scanned every 6 weeks. Dr lens didn’t understand why I was getting sick now. He only knows about getting sick after first one. I have to tell him about this one. I just had chemo yesterday. Could it be the buildup of the chemo?Thank to all of for your responses and encouragement.
This week was a good week.
Margaret- I have talked with the counselor each week about
the kids. I am still doing all the mom
things- making breakfast, lunches, attend all of their sports
events. My counselor has survived cancer twice and counsels
people specifically with cancer, so she has lots of insight.
She feeels that there is nothing to tell the kids at this time, except that
I have cancer and go for treatment. I have lost my hair and eat
less, so they see that each day. She feels that since things are stable,
there is nothing new to tell. If and when things change then
I will need to tell them more. She feels by telling them, it serves no
purpose, except to worry about me each minute.
I agree and want them to live each day of their lives. We
spend lots of time together and are very close. I pray each
day and ask for guidance in all of this.
Also my mom comes three days a week to help out with
meals and just spend time with all of us. This has been
great for all of us.
Thank you for your support.I was diagnosed right before I turned 49. Surgery not an option because it has spread. I started feeling depressed and not right about 40 and went in dor test. Dr. Treated it as depression because he never found anything. Went back since then abot every two years just not feeling right. Bowel problems, etc. He said I probably had ibs. Gave me medication for that. Then started getting back pain and acid reflux in April 2010 and went to him. He thought it was nothing and I asked him for upper gi and ultrasound and that’s when spots on liver showed up.
It has spread to peritinium and 2 small mm spots on lungs. Still so angry seven months after diagnosis that all that time I knew something was wrong and it was never found.Try contacting dr. Lenz at USC . He does work at USC norris on Mon and Thurs, but also has a clinic at USC county I believe 1 day a week. He is very experienced with cc. I have been seeing him since the end of May and I live in Orange County.
I already do attend counseling 2 days a week and am on an antidepressant. I just cannot accept this is happening. For over 4-5 years I complained about stomach issues off and on. It has been 2 months and i’m a little better as far as not crying all day long, but get so sad and upset when I think too far ahead. My son is entering 12th grade and looking at colleges. We are going to take a short family road trip to look at Stanford and Berkerly on Wed. My daughter will just be entering high school. This is all a nightmare.
