Hello,

I'm new to the boards and have been reading them for past few days. My husband was dx. with colon cancer with mets to the liver in Jan 2004.
( stage 4 ) He was started on Oxaliplatin IV every 3 weeks and Xeloda pills
14 days on 7 days off. He was told surgery was not a option at the present time. He is 48 years old and has taken 7 treatments of Oxaliplatin and has been on the Xeloda pills since Jan 2004. We are holding the Oxaliplatin right now due to numbness in his hand put will re start when needed. Still taking Xeloda 14 days then off 7 days.

CT scan in Jan showed several lesions to both lobes of the liver, present CT scan shows liver clear of lesions and colon tumor is also getting smaller. We have been very happy with the Oxaliplatin and Xeloda. He has been weak from chemo but has lost no weight and seems to do really well on this treatment. From what we understand this is a maintenance plan. I have notice some posting that you only get 6 or 7 treatments of Oxaliplatin in the UK. Is there a reason only so few treatments?

This seems like a really nice message board and I hope to be able to get answers and help others. By the way we are from US.

Sandra :wave:

Hello,

I'm new to the boards and have been reading them for past few days. My husband was dx. with colon cancer with mets to the liver in Jan 2004.
( stage 4 ) He was started on Oxaliplatin IV every 3 weeks and Xeloda pills
14 days on 7 days off. He was told surgery was not a option at the present time. He is 48 years old and has taken 7 treatments of Oxaliplatin and has been on the Xeloda pills since Jan 2004. We are holding the Oxaliplatin right now due to numbness in his hand put will re start when needed. Still taking Xeloda 14 days then off 7 days.

CT scan in Jan showed several lesions to both lobes of the liver, present CT scan shows liver clear of lesions and colon tumor is also getting smaller. We have been very happy with the Oxaliplatin and Xeloda. He has been weak from chemo but has lost no weight and seems to do really well on this treatment. From what we understand this is a maintenance plan. I have notice some posting that you only get 6 or 7 treatments of Oxaliplatin in the UK. Is there a reason only so few treatments?

This seems like a really nice message board and I hope to be able to get answers and help others. By the way we are from US.

Sandra :wave:

Hi Sandra :wave:

I am sorry you have come to the healthboards in such circumstances. I don’t know if you read any of my posts but I have referred to my husbands condition and the fact that he had 6 cycles of Oxaliplatin/5fu/folonic acid inbetween his bowel resection and liver resection. In the Uk they prefer to operate on the primary cancer asap and then concentrate on the mets. After his bowel surgery they told us his liver was inoperable due to the quantity, size and location within his liver. The Oxaliplatin regime was used to try and shrink them to an operable level which they did. We were told that the first 6 cycles of the regime are the most effective in obtaining maximum shrinkage. They also wanted to operate asap as the mets were starting to affect his liver function. He had also lost a dreadful amount of weight. His mets were to both lobes and also verged onto a biliary duct (? I think). After liver op he had the final 6 cycles of oxaliplatin to try and reduce risk of recurrence and squeezed in a month of radioT as well.

He did not have Xeloda but my mum did but not in conjunction with the Oxaliplatin as this was too aggressive for her (she was 78 and had other health problems). When she took the Xeloda she had terrible blood blisters appear on her hands and under her nails. They think was due to combination of her warferin and Factor VIII blood disorder. She tolerated it for a while but then came off it but it did shrink her liver mets and probably added quite a few months to her life.

I have not heard of taking both chemo drugs together. Is this a standard regime in your part of the world? Also, had he had any surgery at all (was not sure whether you had referred to just his liver)? I would be interested to know.

Hope the above comments are helpful
Good luck
Ktee

Hi Ktee,

Thank you so much for your reply. I did read your posts and felt like our husbands were about at the same stages. I really felt for you, with your mom and husband both having colon CA. I was sorry to read about your moms death, cancer is such a hard battle to fight.

My husband has not had any surgery, the primary cancer in the colon is in the desending area and is not very large. It is not causing any problems with bowel passing thru. Our doctors felt since his liver was in such bad shape ( lots of mets both lobes and also had biliary ductal dilatation of the left lobe) we should treat with chemo.

I believe this regime ( Oxaliplatin- Xeloda) is fairly new, Our Oncologist had a pt that went into a trial program and had great results before FDA approved Oxaliplatin to be used here. My husband is young but does have other health problems.. High blood pressure and Diabetes. I would really like for him to have the colon resection, but he seems to be doing so well and the doctors feel leave it alone .

I am very thankful for the Oxaliplatin/Xeloda ( and prayers). We are both in our 40's with 2 boys (20 & 13 ) so we have alot of life to live. We will be married for 23 years on Sept 11 . So, we plan to fight this battle long and hard... I hope your husband is doing well.

Sandra

Hi Sandra.

Must confess i'm a little confused now. I was told that if the primary tumor is not removed then all that will happen is for the cancer to keep growing back and metasizing to other organs. Is there no plan at all to perform resections? :confused:
With my husbands case both we and the medical team discussed the fact that the cancer was aggressive and invasive and therefore needed aggressive and invasive treatment. The surgeries were really bad as so many here on the boards will testify to but I dont think I would let the doctors sit back and leave it alone (easy for me to say i know).

Good luck
ktee

One thing that all of us who have experienced cancer in the past will have to deal with is that new procedures may, or perhaps I should say, will, come about that, if available when we went through it would have resulted in less pain and discomfort than we did experience. In Sand's case this could be one of those. If the original tumour and the mets are all small enough perhaps this regimen is thought to be enopugh to shrink the cancer to nil without surgery. Sand(dra?) do you know if this is an experimental or very new treatment?

Hi Jaydees & Ktee,

Yes, this is a very new treatment here in US. Surgery used to be first line treatment but now we are seeing alot of people taking chemo first, then surgery later or no surgery at all. Our doctors felt there was no way to get all the cancer out with surgery, so why not treat with chemo while he was strong and not put him thru surgery and then be to weak to handle the chemo. They are treating my husband very aggressive with the chemo and it really has been working great... This type of treatment is a maintenance plan.

The doctors explain cancer may one day be treated like high blood pressure or any other chronic disease. My husband has had some side effects from the chemo, weak,some nausea, and numbness in hands and also did run fever with last two treatments of Oxaliplatin. But over all he has really handled the chemo very well. He will stay on the chemo, taking breaks from the Oxaliplatin.

I noticed Ktee mention her husband took the Oxaliplatin over a 2 or 3 day period, we go into the Cancer Clinic around 9am and take the IV Oxaliplatin and are usually done with the IV by 2pm the same day. Then we go by drug store and pick up RX for Xeloda and start the pills next day for 14 days, then are off 7 days. We see the Doctors every 3 weeks and have Ct scans done every 2 months. Past 2 CT scans the liver has been clear no lesions showing at all.

So we feel thankful and are happy with the treatment. I'm sure different types of treatments are being tried to see which yields the best results.

Sandra

Hi Jaydees & Ktee,

Yes, this is a very new treatment here in US. Surgery used to be first line treatment but now we are seeing alot of people taking chemo first, then surgery later or no surgery at all. Our doctors felt there was no way to get all the cancer out with surgery, so why not treat with chemo while he was strong and not put him thru surgery and then be to weak to handle the chemo. They are treating my husband very aggressive with the chemo and it really has been working great... This type of treatment is a maintenance plan.

The doctors explain cancer may one day be treated like high blood pressure or any other chronic disease. My husband has had some side effects from the chemo, weak,some nausea, and numbness in hands and also did run fever with last two treatments of Oxaliplatin. But over all he has really handled the chemo very well. He will stay on the chemo, taking breaks from the Oxaliplatin.

I noticed Ktee mention her husband took the Oxaliplatin over a 2 or 3 day period, we go into the Cancer Clinic around 9am and take the IV Oxaliplatin and are usually done with the IV by 2pm the same day. Then we go by drug store and pick up RX for Xeloda and start the pills next day for 14 days, then are off 7 days. We see the Doctors every 3 weeks and have Ct scans done every 2 months. Past 2 CT scans the liver has been clear no lesions showing at all.

So we feel thankful and are happy with the treatment. I'm sure different types of treatments are being tried to see which yields the best results.

Sandra

I get a bit paranoid about it Sandra...... take no notice of me...... im english :jester: :bouncing: . Its a real dilema for a lot of people i think. We had to decide whether to have last 6 cycles of chemo or not. Do we use it now or wait and see and then use it but with no guarantees either way :confused: . If you have faith in your medical team and you feel in control yourself then you have believe them. Its worked out well for us too.

Regards to all
ktee

Hi

I also have been reading these boards for quite some time, not a regular contributor. My mom (57) had emergency surgery at the end of Dec 2003. They knew they were probably dealing w/cancer but not sure the extent. When they got in they found it had started on the appendix. She had 2 portions of colon removed, ovaries, uterus, anything that wasn't a major organ. Staged her IV, recommeded palliative care. The oncologist she chose started her on Oxyplatinin (sp), 5FU and Leucovorin. He also was not very optamistic. Then, about 5 treatments in my mom finally asked how many treatments she would receive total. He replied that if we look at this as terminal we treat until it does no more good, but if we look at this as preventative we do 12 treatments, and we will do 12. We felt that he was definately more optamistic. The more she has the tougher it is getting but she is down to 2. And although they have been postponed a couple of weeks due to a low white blood count I believe she feels it is worth it.
You have to keep hoping and fighting and she said in Dec. she was going to fight even though she was given no hope.

My husband also was on Xeloda. He was dx with rectal cancer Oct 2003. Did rad/chemo for 5 weeks. Rad ever week day and Xeloda every week day also, with sat and sun off. He was blessed that he had few side effects from either. The combo also shrank the tumor enough to save his rectum. He is now on Xeloda 2 weeks on and one off as a post op treatment for any cancer cells that may have got away during surgery.
We thank GOD for our families, two wonderful onc, a great doctor and our miracle.
Going thru something like this will not only make you believe in God, but will make you want to believe in him.
God bless and good luck....

Yes, Ktee it is hard not to get paranoid about any of this. Once you are Dx with staged IV colon cancer it is looked upon as terminal here in the US. Surgery may help but it is not looked upon as a cure. Which makes you look at all choices being given to you.

All we can do is believe in God and trust our doctors. If you think about it we are all terminal at any given time.

Kaye2003, i'm glad your husband is also doing well on the Xeloda, its nice to hear other people getting good results from this medication. It's so nice to be able to take the Xeloda at home and not have to go and get IV 5Fu, treatments have really come a long way.

Sandra

My father was dx'd stage IIIc (7 of 13 nodes involved) in May of this year and has also been receiving Oxaliplatin/5Fu/Leucovorin. He was also prescribed 12 rounds, pretreated with calcium/magnesium then Oxaliplatin over 2 hours, post-treat CaMg again then hooked to the pump with 5Fu over 48 hours.

He has been tolerating the treatment very well. Began experiencing neuropathy after treatment 4 but in begins to go away slowing after the first week. So, his dose has not been postponed or decreased.

His doctor also began very pesimistically....we were devasted when we left the office. He said that the prognosis was poor due to the involved nodes and that although the goal is cure there is no guarantee. We are also very optimistic as is my dad. We have found over time that the doctor has become more optimistic and positive which has helped my dad a lot.

He has had one CT before treatment (clear) and will have another between now and the end of the month. We hope and pray it is clear.

There are a lot of very positive posts here...many people beating the statistics! Cheer for the good guys!

Pgta5,

Thanks for the reply, my husband started on the Oxaliplatin IV in Jan 2004. At that time they did not know to give calcium/magnesium with the treatments. This should help with the numbness of the fingers/hands. His last treatment was May 25, last 2 CT scans showed his liver clear so they have been holding giving the Oxaliplatin to give his hands time to reverse. So its really good your dad is getting the calcium/mag, hopefully he will have less problems with neuropathy. The information we received stated it should reverse within 8-12 months.

We live in Georgia, bulldog country! My husband is doing really well. We are trying to keep positive, I feel we have come a long way from Jan 2004. Our Doctors seem really amazed how well my husband has done with the chemo treatments. It's really sad how some people show no results then others just do great. I feel very thankful for the results we have been getting. Hopefully, these new drugs will buy us time for a cure.

How many treatments does your father have left to take? Tell him to keep positive, it's the only way.

Sandra

I agree...attitude is half the battle.

My dad has treatment 7 scheduled the 17th...so 6 more to go (12 total). He also has tolerated very well. He has actually put on about 7-8 lbs since surgery. He is looking better now than he did post-op (they made a 20 cm incision and removed 17 cm of colon along w/ lymph nodes). He forces himself to eat and drink (says everything tastes like grass :) He has maintained an exercise program (some weights and walking) He was an avid runner and weigt trainer--scuba diver (very active at age 66). He has never smoked, doesn't drink...very healthy. It was a true shock to him to be dx'd w/ cancer and have to endure chemo. But then again is anyone ever prepared?

I'm glad your husband is doing so well. I pray that he continues!