michmcd
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What a blessing. I have 20 year old twins. They both took off last semester to help me out after my diagnosis. They are back in school. My daughter is psychology pre-med and my son wants to be a fire fighter. It is neat seeing their dreams unfold and them move closer to their goals. Good luck.
Michelle
Radiation Recall
When patients are exposed to certain chemotherapy agents a few weeks or months (or, rarely, even years) after completion of radiation treatment, some acute radiation reactions may re-occur. This phenomenon was first described by Dr. D’Angio (who is currently at the University of Pennsylvania) who observed skin reactions corresponding to the outline of radiation portals after use of dactinomycin (actinomycin D) a few months following completion of radiation treatment (Radiology, 73:175, 1959). This is an important issue when multimodality therapy is considered for cancer patients, and also the reason that some agents are avoided or used in reduced doses in the weeks and months after completion of radiation therapy.
In addition to skin reactions, gastrointestinal and urinary reactions as well as radiation pneumonitis have also been reported in association with this phenomenon. In theory, any organ could potentially develop such a reaction.
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I had a reaction that damaged my liver and created severe skin damage on a square in my front and back that duplicates where the radiation was given in March. It also created problems with my lungs. It created alot of pain. They implanted a pain pump to help ease that.Michelle
I am also 46 and was diagnosed with Stage IV in December 2008 with mestastisis to my spine and liver. I did 3 weeks of radiation for the tumor on my spine. I have been doing gemzar since January. I plan on talking to my oncologist about adding cisplatin when I see him later this month. Best wishes for your brother’s treatment.
I live in Fort Collins and was diagnosed with cholangiocarcinoma in December 08. The doctors at the University of Colorado Anschuz Cancer Center are the ones you want to see. I saw Dr Colin Weekes who is a medical oncologist. They also have some clinical trials going on for cholangiocarcinoma at the University of Colorado. I am currently doing treatment in Fort Collins, but have to go down to University of Colorado to get my stents replaced every 3 months. Good Luck. Let me know if there are any other questions you may have.
http://www.uccc.info/conditions/cancer/index1.aspx
In December and January after being diagnosed in early December, I did not have an appetite. I lost 30 pounds. For some reason smoothies tasted really good. There are different recipes. I used frozen fruits with peach nector you can get in a can. You can add protein powder or yogurt or milk for some protein. My doctor prescribed a small (10mg) dose of ritalin to help with the fatigue. I also went through a blood infection after my first ERCP and ended up in the hospital. I went through 3 weeks of IV antibiotics at home. It is hard. It just takes time to get your strength back, especially when you don’t feel like eating and have spent alot of time in bed.
Let me know if you have any questions about my experience.
Michelle
Tony,
I was diagnosed in Dec 08 with stage IV cc. I have been doing Gemzar since January. I had alot of side effects the first dose, but most of those have gone away. I have had 11 doses so far. When I was getting my stents replaced in February, they said the tumors in my bile ducts were significantly improved. I also had a PET scan in Dec and March. A spot found in my liver in the Dec PET scan was gone in March. So the chemotherapy has been working. The doctors have refused to do radiation because my cancer had metastisized to my spine. They did do radiation on the tumor on my spine because it was causing pain. Let me know if you have any questions about my experience.
Good Luck.
MichelleI am only on Gemzar. I have had 11 doses. I do 2 weeks of chemo with one week off. They reduced the original dose and went to the 2 weeks on because of the blood counts being so low on the 3rd week. I am waiting to hear about my CA 19-9 when I go to the doctor tomorrow. I also had a bone scan last week.
I was diagnosed December 2008 with stage 4 cc that was non-operable. I had metastisis to my spine and liver with fluid in my lungs and pelvis. I had 3 weeks of radiation on my spine. It was called pallitive since it was causing me pain. I have a bone scan next week to see if there is any other bone metastatsis.
I started chemo in January (gemzar). I have had 10 rounds so far. I had problems with blood counts so they decreased the dose to 1250ml with 2 weeks on and one week off.
The last PET scan in March showed the fluid in my lungs and pelvis gone. It also showed the spot in my liver gone. My CA19-9 went from 7998 to 526 between December and March. I also had an ERCP in February to replace my stents. At that time the doctors said that the tumors in my bile duct and hepatic duct was significantly improved. My doctor said that I will be on chemotherapy until my body can’t tolerate it anymore.
Talk to your doctor about the constipation. I was on narcotic pain medicine from November until mid March and had terrible constipation. They had me take Senecot-S which you can get over the counter. It has a stool softner and laxative. The doctor also prescribed Enulose.
Good luck.
MichelleI was diagnosed on 12/8/08 and surgery wasn’t an option. I just had my 10th chemo with gemzar (gemcidibene). The biggest side effects are fatigue and low blood counts. I had a little bit of nausea but it has been controlled with zofran or compazine. I haven’t had any thinning of my hair. A pet scan in December showed a spot in my liver and fluid in my lungs and pelvis that the doctors said were metastisis. On the pet scan in March, the fluid in my lungs and pelvis were gone along with the spot in my liver. My CA19-9 was 7998 in January and went down to 526 in March. So the chemotherapy has been working for me.
I lost 35 pounds between when I was diagnosed in December and February. I had problems with being able to eat until March. I had some extra padding, so I don’t look skeletol. The problem is I don’t have any clothes that fit now
. I am glad to hear things are going in the right direction.
