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Scan Results - Not what I was hoping for

Brenda3.16
Posts: 211
Joined: May 2009

I had my Pet Scan yesterday and got the results from the Pa today. It showed an increase in the size and number of the spots on my lungs. I am still trying to digest this. The spots in my liver were stable and everything else was stable. I started on Folfox in March of 09 and had a great response to that. I have been on Xeloda since 9/09 and remained stable with that. Avastin was added to the Xeolda in Feb 2010 and this is my first scan since the Avastin was added. I was expecting that I would have improvement due to the addition of the Avastin. I was mad, sad etc..!!

My doctor wants me to try folfori next. I am going to my onc on Monday to discuss this with him. The pa told me that the folfori would have the lovely pump. I hated the pump with the folfox. I tolerated the folfox well but the pump was a big inconvience.

I feel great and have been working full time as a teacher, still exercise and do everything. I was really shocked by this news. I resent the time this takes away from my family. This time of year is really busy at my school. When I was on Folfox I didn't work with the pump on. I took off every other wed, thur and fri. I am guessing this will probably be the same situation. My daughter is in 8th grade in the middle school I teach in. I was looking forward to being there for all of the fun end of the year activites that she will be in this year.

My daughter just got home from Karate. I told her that I will have to be switching medications , because this one wasn't working as good as it should be. She doesn't say much about my cancer at 14. I try to keep her informed without worrying her about it. That is the worst part of the horrible disease to me. I feel so bad that it has to not only impact me, but impact my 14 daughters life.

I guess I have to start the flofori and pray for great results. Does anyone have anything to offer about folfori ? I will continue with the Avastin as well. Has anyone every done Xeolda istead of the 5-fu. I know some people did Xeloda with oxy instead of the terrible pump. The pa said that she had never heard of not doing the pump with folfori. I know some places have the smaller pump. Mine is still the big fanny pack thing.

Can anyone offer me any advice about folfori or advice about anything. I am so MAD, SAD, ANNOYED, ETC.........

Brenda

AnneCan
Posts: 3692
Joined: Oct 2009

Yes, I am on folfiri + avastin + it is working for me - has reduced all tumours including the colorectal ones. Previously I was on folfox + radiation; the radiation worked to reduce the colorectal tumours (2) but the chemo did not work (liver tumours did not shrink). I was really disappointed too, but have found the folfiri + avastin is working for me; I hope you get the same results. I have found the folfiri + avastin to be tolerable for me + I only have the pump for~46 hours so I find it very manageable (when I was on folfox I had the pump 24/7 for 5 weeks). I did lose most of my hair on the folfiri, but it is growing back even though I am still undergoing treatment + now I am getting all kinds of compliments on how soft it is, how good it looks etc. I am really sorry you got the news you did, + it is OK to be mad sad, etc. I have 2 daughters, 16 + 21 + totally get what you are saying about your 14 year old. I get the feeling you are a terrific Mom to her. I want to wish you bundles of success with this treatment, + feel free to ask anything else, PM me etc.

Jaylo969
Posts: 827
Joined: Jan 2010

Mad, Sad, annoyed etc. is understandable. I have no advice concerning folfori so instead I will give you a warm cyber hug {{{Hugs}}} and hope that maybe you will be able to do the Xeloda if that is what you wish. The pump didn't bother me but I suspect it would have if I had been around a lot of children like you are.

Best wishes Brenda.

-Pat

tootsie1's picture
tootsie1
Posts: 5056
Joined: Feb 2008

Hi, Brenda.

I'm sorry you didn't get the results you were hoping for. I hope this next run of chemo will be very successful for you and not too hard on you.

*hugs*
Gail

geotina's picture
geotina
Posts: 2117
Joined: Oct 2009

I was waiting for you to comment. I was hoping that things would be more stable for you. You were diagnosed about the same time as George. I was always surprised that you did not get get Avastin from the get go and that your onc waited until after Folfox to start Avastin but figured he had a reason for doing so. George has never had Xeloda. He goes in weekly for a IV of 5FU Leucovorin adding Avastin every other week, takes about 30/40 minutes . Don't know if it is keeping things in check but it appears to at this point and we will find out at next scan. When you see the doctor see if you can get around dragging that pump around, but, if you need the pump again that is what you have to do. I never knew that George hated that thing until he was done with it. He didn't complain. His pump was actually pretty small, about the size of a cassette tape or a bit smaller.

Well the lung mets are worse but it appears the liver mets are stable so that is a bit of good news, i.e. the liver mets.

I know you have had second opinions on treatment but would a second opinion from another oncologist be in order, someone with a more aggressive treatment plan maybe? Don't know what kind of agressive treatment but might be worth looking into.

Again, I am so sorry the news was not what you wanted to hear but you still have options so hang tough. I think of you so very often.

Hugs - Tina

krf's picture
krf
Posts: 99
Joined: Dec 2009

ARGH!! I am sorry Brenda. Folfiri will be ROger's next cocktail, I think, so I have nothing for you on that.
I know that, from getting to 'cyber know' you, I would be so happy to have such a dedicated wonderful teacher for my kids! Keep it up. You never know what this round will bring you. I will be thinking about you. I hope your onc can shed some more light on your scan on Monday.
Kim

Brenda3.16
Posts: 211
Joined: May 2009

Thanks Kim. I feel really blessed to have a job that I love. I am feeling really sad that I will be missing many of the end of the year activities with my new chemo starting up. I don't usually sit around and feel sorry for myself, but that is the case tonight. Tomorrow it will be back to work. I hope Roger is doing well. He is so lucky to have you taking care of him. Your kids are really cute. Brenda

Brenda3.16
Posts: 211
Joined: May 2009

Thank you to all of you who responded. I am feeling very alone in all this tonight. I have talked a lot to my mother and sister. My mom wanted to come over, but I told her not too. I called one person from work to tell them about the scan. I told my sister and mom and they are always great about everything. Tommorrow I will tell the principal and other teachers in y building. I hate to do this. They have just started treating me normally again. I am going to bed now, hopefully I will be able to sleep. I tried to help my daughter get her stuff together for her 8th grade class trip tomorrow to Dorney Park. I appreciate all of your frindships and advice.

Brenda

slamb58's picture
slamb58
Posts: 32
Joined: Jul 2008

Hi Brentda,
Sorry to hear that you did not rec'd the good news you wanted to hear. Ask your onc if you can do the xeliri regime. This is the same as folfiri but instead of the infused 5fu you take the xeloda pills instead. I think some onc's are a little hesitant because of the diarrhea issue that you can get with the Irinotecan but if you do not have that issue with xeloda, then maybe they might agree you would be a candidate for it. I have been on the xelox regime twice now, so I have never had the pump, nor do I want to. Good luck.

robinvan's picture
robinvan
Posts: 1014
Joined: May 2007

I'm so sorry to hear about your scan results. I've done FOLFIRI alone and XELIRI with Avastin. Irinotecan can be hard on the bowels(diahhrea). I hope it works better for you.

My daughters were all a little older when I was diagnosed. It is still hard to share bad news with them.

I hope you can still enjoy these last few weeks of school.

Peace and blessings... Rob; in Vancouver

Brenda3.16
Posts: 211
Joined: May 2009

Thank you both for the information on Xeliri. When I met with the pa yesterday, she had never heard of using the Xelods instead of 5 FU. Do you know if the results are supposed to be as good.

I didn't sleep much last night. I am finding it really hard to deal with this news. I am off to work this morning, where I will tell my boss that I will be out more due to my new chemo.

I am so thankful for this board. I have friends and a great family, but my mom, sister and one friend are the only ones who come close to understanding how I feel. I want to get back to feeling normal.

Brenda

Sundanceh's picture
Sundanceh
Posts: 4408
Joined: Jun 2009

Hi Brenda

Very hard news indeed. Sometimes just going to bed is the best thing one can do - rest helps our brains we need to digest and move on with the next hurdle.

Doesn't make it any easier, but rest is good for the body and the mind.

I know how it is to go into work and have to tell some folks what's happening. While not on the same scale as yours, I'll have to be doing that shortly when I get a lung surgery time. I've had to leave 3 times, it never gets easier.

We're all pulling for you. And super glad that you have your family close by - that's a huge comfort:)

-Craig

Brenda3.16
Posts: 211
Joined: May 2009

Craig, I know I am really lucky to have my family. My mom and sister are the best. They are always there for me. The people I work with are really nice, but they don't totally get it, like all of you do. I hated to even tell anyone about it except for all of you on the board and my mother and sister.

Where do you work Craig ?

Love, Brenda

lisa42's picture
lisa42
Posts: 3661
Joined: Jul 2008

Brenda,

Dang- I just wrote a long reply, clicked "post comment" and the whole thing disappeared. Anyhow, I just wanted to say I'm sorry your scan results weren't what you had hoped for. I'm sure it felt like a punch in the gut, especially when you were expecting better. So, now you'll go forward and fight. I'm surprised your onc hasn't heard of using Xeloda instead of the 5FU for the Folfiri/Xeliri regimen. That would be a warning flag to me, that she might not be up on all the latest. Maybe not an issue now, but I'd consider finding another NCI cancer center onc to meet and consult with in the future. My onc now relies on the recommendations of the other two oncs I've consulted with. He's good, but a bit more limited & my insurance won't let me go elsewhere, but they did allow me a once a year consultation/2nd opinion with one other onc. The other one (Dr. lenz at USC)- I paid for myself, but I think it was worth it. Dr. Fanta at UCSD is the first one I've consulted with &, fortunately, my regular onc Dr. Helton, is very willing to talk back and forth with Dr. Fanta. He actually sends him copies of all my scan reports, CEA tests, etc. in case he has any feedback. I feel like I'm being looked after better this way. Just something to consider, if at all possible.

Well, you take care- sending you a big hug!

Prayers,
Lisa

Brenda3.16
Posts: 211
Joined: May 2009

Thanks Lisa. I saw a physician's assistant on Thur when I got my results and she had never heard of using the Xeloda with the folfori. I meet with my oncologist on Mon. I love him and the PA that I see there. There are both very smart and would do anything for me. They are 40mins away from the small town that I live in. They are in Scranton, PA. They are not a NCI. I had also been treated at Sloan Kettering in NYC from time of DX in 3/09 to 11/09. I would go there every 2 months for scans and appointments with ONC then I would do chemo locally in Scranton. The Dr at Sloan was totally in charge at that time. NY city is a 2 1/2 drive for me, which I don't mind, I love the city. I never connected with the DR there. She would not let me ask any questions and she did not remember me at all from visit to visit. At that time her recommendations were always exactly the same as my local onc. I also had a consult with an ONC at Foxchase in Philadelphia in Dec. She said that she would do excatly what my local onc was doing.

I do feel like I should have a NCI involved. I have recently been contemplating trying to see another ONC at Sloan or trying Dana Farber in Boston.

I plan on asking my ONC about xeliri on monday. I wondered if he wants me off Xeloda because I have been on it since sept ? It is one of the many questions that I have listed for him to answer on Mon.

I am feeling a little bit better today mentally. I know that I have to move on. I am just really mad that my life will be disrupted so much again. I only have 19 days of school left and I will be missing a lot of them, which annoys me. It is hard for me not to be there. We have a kayaking field trip next Fri that I was looking forward to, a trip to Hershey Park with the band, which my daughter is in, and I was supposed to take my daughter and 2 of her friends to the state computer fair with their project that won at the local level. I will be missing some of this stuff due to my new chemo routine which is not set up yet. I will find out on Mon.

The picture of you and your family is really nice. Was it at a wedding ?

Thanks for being there for me. Love, Brenda

lisa42's picture
lisa42
Posts: 3661
Joined: Jul 2008

Hi again Brenda,

I'm glad to hear the one who hadn't heard of Xeliri was a PA, and not the oncologist. Hopefully, the oncologist will be very knowledgeable. Yes, the picture was at a wedding. You hang in there & I'll be praying for you to get through the rest of the school year with as little disruption as possible.

Hugs,
Lisa

Annabelle41415's picture
Annabelle41415
Posts: 6246
Joined: Feb 2009

So sorry that the scans didn't come out better for you. Hoping that this new treatment will be successful in shrinking the tumors and getting rid of them.

Kim

Brenda3.16
Posts: 211
Joined: May 2009

Thanks Kim. I also to shrink at get rid of the tumors !

Brenda

slamb58's picture
slamb58
Posts: 32
Joined: Jul 2008

Hi Brenda,
When I was first diagnosed back in 2008 and my onc discussed with me the treatment options, she had recommended to me the xelox regime. I was concerned because I had done a lot of research and I had not heard of this one. Mostly I had read on these type of boards that most people were on the folfox. She had told me that studies had showed that the xeloda was just as effective as the infused 5fu, and since I work full-time she felt that would be the better choice for me. I responded very well to my first round of 3 cycles and was able to have a liver resection. After the surgery I finished up the last 3 cycles. After 8 months I had a recurrence to my liver, so I started another round of the xelox. Fortunately I responded again very well and after the first 3 cycles I had an RFA on the spot that showed up on my liver, and I just finished up the last 3 cycles. I know exactly how you feel about the news you have rec'd. I was devasted also. I felt like I was not going to get through this. After a few days I was able to deal with and continue on the road that has been dealt me, as I know you will too. If you onc doesn't know about the xeliri, you definitely owe it to yourself to maybe find another onc. Like Lisa said, you definitely want someone that is up to speed on all treatment options.

Brenda3.16
Posts: 211
Joined: May 2009

slamb58, Thanks for the information. For some reasons my onc was very hesitant to use Xeloda instead of 5 fu. My onc at Sloan made that decision in Sept and it made my life SOOOOO much easier than that annoying pump ! I plan to question him about it on monday.

I have not heard of many people going back on Folfox a second time. I had a good response to Folfox, but the neurapathy was terrible and the Liver enzymes started to be off.
Love, Brenda

taraHK
Posts: 1961
Joined: Aug 2003

Hi Brenda,

I am so sorry that your scans were not everything that you had hoped for.

I am in a somewhat similar situation! I also had recent not-so-good news on a scan, and will most likely be starting on FOLFIRI -- which I have never had before. I've been on FOLFOX, xelox, xeloda alone -- and a few other things!

Like you I really dislike that 48 hr treatment -- I was so much happier on xelox/xeloda. I will also be asking my doc about Xeliri -- don't know if they will let me....

So, let's keep in touch and compare notes!

I have a 17 year old still at home and a 19 year old at college. They have been so great throughout all my treatments. They are what gives me the strength to keep plugging away at it.

Tara

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