CSN Login
Members Online: 7

You are here

My 1st Oncology Appt

Shayenne's picture
Shayenne
Posts: 2370
Joined: Jan 2009

So, I went to my first oncology appt, and met my doctor who I found very kind and sweet, pretty young, but seemed very smart who specializes in the colon..she actually wanted me to do some clinical trials with the drugs Bevacizumab(Avastin)and Cetuximab which are 2 FDA Approved drugs, to mix in with the standard chemo that I would be doing anyway...She will be giving me 5FU, Leucovorin, with Irinotecan (FOLFIRI).. she didn't want to give me any Oxaliplatin because she doesn't like giving her patients that in the winter, that's too torturous to her, and said the Irinotecan has the same balance as the Oxal, just different side effects, she thinks it is more tolerable as well, and has patients who are able to work full-time on this, she said I wouldn't lose my hair, or have mouth sores..

I don't understand these clinical trials, they want me to be a part of Phase 3, (they already done Phase 1 and Phase 2) and just need to know what more side effects the Avastin and the Cetuximab would have.. they said it showed great promise, and that it helped stopped the liver from metastasizing, but I'm really scared of experiencing side effects that they don't know of.. what would you all do? She said I would still get the benefit of chemo no matter what I do, but I would be monitored and watched very closely with the added drugs. Has anyone ever done these clinical drugs? I have a couple days to answer them, they are sending off to have make sure my biopsy didn't have the gene mutation K-ras, and if it didn't they said I'd make a perfect candidate for this trial.

She did tell me these tumors would never go away, but miracles do happen, and she had sent off patients to surgery when their tumors got small enough, who surprised her, thinking, they would never get that small enough to be removed. She did tell me there are alot of treatments as well, and already gave me prescriptions for everything I asked for: Anti-Nausea pills, The Lidocaine creme to put thickly over my port an hour before I get there and put saran wrap on it, to cover it, since it takes abit to numb, some anti-anxiety meds, and more oxycodene in case I get any pain..

I start my chemo in 2 weeks.. kind of scared, but I hope this works, and hopefully shrinks these tumors quickly.. I will be getting it every 2 weeks she said, and will carry home one of those little fanny pack to continue at home with, and then she will have a home nurse come to my house to disconnect it from me, which wow.. I told her I lived 2 hours away! and she said that be no problem, they have local people everywhere associated with them to do this.

I'm kind of confused and wonder if anyone would ever do any kind of clinical trial with approved FDA drugs? and do you all think her plan for me sounds normal anyway on what she'll be giving me every 2 weeks?

Hope to talk soon! wow.. I am already exhausted just from this long consult. My first chemo treatment is supposed to take 5 hours there, not including getting the lab work and seeing the doctor first. So, I guess I'm on my way to battle soon.

Hugsss to all!
~Donna

Buzzard's picture
Buzzard
Posts: 3073
Joined: Aug 2008

Clinical trials are how the cancer research has come so far as it has to begin with...The trials are to try new drugs to see how effective they are to different types of cancers. Who would have ever thought that chemical warfare would actually one day be used to fight cancer in people. You will be on a great chemo regimen for your type of cancer and also aid in the research so needed to save lives as well as the benefit of maybe getting the additional boost of medical help that pushes you back to NED ...Through surgeries I donated blood and all the tissue they took out of me so that maybe that little bit of me will help keep someone alive or from going through this someday. We all, as bad as it may seem to you right now are front line soldiers in this battle of cancers to be the first defense to secure someday a cure as they did with the polio vaccine or smallpox vaccine, etc. We have been chosen to be the fore runners of trials so that others may never know the battles we fight or survive to help the ones that have not a clue as to their future in this disease.
Feel honored that you are one that has been chosen to be a part of a trial to maybe someday save the life of a child.. Thats the way to look at it. I don't consider myself to be a victim of cancer anymore, I consider myself special in the fact that I have been a chosen one to be of benefit in the cure of this disease. Its all in the way you look at the path as to how the journey will be. It won't be easy, but by your help, there will be someone someday that will never have to face what we go through. Let that be your light to focus on when things aren't just the way we like them to be.....Its your choice, and we are all in this together either way you choose, You just hang on to this rope we all have and we'll all do this together.....God Bless ya sweetie......

pamalama's picture
pamalama
Posts: 28
Joined: Dec 2008

Donna,

Hi my hubby started chemo on 1/14 he's on Folfox 12 cycles every 2 weeks and Cetuximab (Erbitux) every week for 6 months. He is in the big study to see of cetuximab helps with stage 3 patients. Because he is in the study both the Erbitux and oxilplatin are covered by the study. Erbitux is like $5000 per infusion. His first day at chemo was about a 7 hour day, he had a good breakfast i brought him lunch and he had plenty of fluids to drink, staying hydrated or over hydrating is key. The folfox regimen hasn't affected him very much at all except for fatigue after pump removal. The Erbitux however has been very TOUGH I don't know if your onc explained about the erbitux rash that you will get but it is pretty awful and really affects some people. Also if you are getting Erbitux make sure you get Kras gene testing done the drug is only effective for those who have the right type of gene. Best of Luck. If you have any other questions check out the support forum at colonclub.com

Pam

hollyberry's picture
hollyberry
Posts: 176
Joined: Nov 2008

Donna,
I know it's been a very rough day and I commend you for getting through it so gracefully. I've been on a phase 2 clinical trial for 7 months and am receiving Carboplatin (actually just finished that one-yea!) ,Taxol (also a paltinum drug) and Avastin; this regimen is giving me more time with my family and is well worth the side-effects. If yours can shrink the tumors enough to remove them, I say go for it! We are making our contribution to folks who will be diagnosed with cancer later and benefiting from the latest scientific breakthroughs. It seems like a win-win situation, and you are always welcome to drop out of the trial if you no longer want to do it.
Glad everything went well; you're in my prayers.
hugs,
hollyberry

CherylHutch's picture
CherylHutch
Posts: 1399
Joined: Apr 2007

Pam... it sounds like she has/or is being checked for the K-ras gene... according to her post ;)

Donna... way to go!! Yes, it sounds like your oncologist is right on top of things and has studied all your information and come up with a plan that will be best for you. It's also great that you have met her and like her! Hahaha... they ALL are young nowadays... what does that say about the rest of us??? Are we getting older??? But, young is good... it means they are familiar with the new way of doing things and aren't afraid of change and trying out what is best.

Clinical trials are great!! Not only will you be watched like a hawk (which is a fabulous thing), the drugs that are being used in the clinical trials will be covered by the study (at least, up here that's what happens, so I'm assuming it's the same in the States). This will save you huge amounts of money... or at least you won't have to be fighting with your insurance company... they will just automatically be covered by the study group.

The meds you mentioned are all great chemo meds for our kind of cancer... and I'm guessing that with the medical treatment and your great attitude (and youth)... you are going to come sailing through this with no problem :)

I, too, had a homecare nurse come to my place to unhook my chemo pump when I was on chemo. I live right in the city and would have been able to go in and have it removed... but let me tell you, it is way more convenient when they can come to your home... or even place of work if you are working at the time. I was volunteering at the theatre office during the day in the summer, which was smack dab in the middle of our large city park... and the nurse said, if I wanted, she'd come to the theatre office. I was tempted , but I just stayed home longer that day and after she left, I went to the office ;)

So don't you worry. Clinical trials are GOOD things!! And yes, if I was offered any, I'd jump at the chance :)

Hugggggs,

Cheryl

Faith88
Posts: 55
Joined: Sep 2007

I just want to add that Clinical Trials are not to be feared. Anymore than you would fear chemo itself. Especially Phase 3 trials, they've done all the safety and animal testing first, so you are at the stage where they are fine tuning it. ( I work in this industry so am a bit familiar). Plus as Cheryl mentioned, you will be watched and monitored very closely, maybe even more so than with a regular treatment plan.
Also you can always drop out at any time if you find it is too uncomfortable or you are having too many bad side effects. I think it's a win win, and I am wishing you the very best,
Faith88

Mike49's picture
Mike49
Posts: 269
Joined: Nov 2008

I am on FOLFOX + Avastin, the Avastin is a monoclonal antibody that targets the tumor's blood supply and starves it. I was put on it even though I am stage 3 because my PET scan was so obscured by scar tissue and a wound infection after surgery. I am pleased to hear your Oncologist is kind and aggressive. Whatever you want to do, but I can tell you, my doc said to me, I don't need to add Avastin if you don't want but evidence suggests it can help even stage 3, so if you are game lets get aggressive with this. I get my care at the VA hospital and think the world of my oncologist, I told him, lets get this thing, give it to me. I have had 4 treatments with Avastin, very little side effects, it dries you out and their is some constapation, I have learned to eat a lot of soups and liquids the days leading up to and after the avastin. The FOLFOX has a few things like nausea, but they have meds to help us with that. Your a survivor with a long life ahead, Good luck, If you have a good feeling about a oncologist, it means alot. Don't worry that she's young, I bet she's smart and caring too.

Lets beat this thing

MIke

Shayenne's picture
Shayenne
Posts: 2370
Joined: Jan 2009

I just didn't want these drugs in me if they were going to shorten my life rather then help it, and no, she never told me about a rash either the Certux..where is the rash? is it an allergy reaction? I was reading on some of what these drugs can do, and it's kind of scary, but then again, all the drugs they are giving you are scary. She said she mainly gets good results, so maybe I will try it. I wonder it if will make me last longer, and anything to shrink these stupid tumors. THanks all, I knew I'd hear the right advice about it coming here.

We asked the clinical study lady about the insurance paying for these trials, and she said they would fight it and they usually win over the insurance companies, since they are a Research Center. I heard it was really expensive, and no they don't pick up the cost here in the US, we do...they try to get the insurance companies to bill you.

But, if you think it's a good thing, then sounds good to me, I don't mind doing this to help future people not suffer with this.. heck, my own kids can get this, but does anyone know if hair loss was something it did? or did it make anyone really sick for a long time? I was reading about Avastin causing GI perforations and all that?? some of it sounds so scary.

THanks for all your responses. They only want to treat first timers who haven't had any treatments yet with this, and want to do it as soon as possible, though it may take a week for them to make sure I don't have the K-ras gene mutation. Glad to know this is a good thing, and not being some sort of guinea pig..lol..

~Huggsss
Donna

dixchi's picture
dixchi
Posts: 438
Joined: Jun 2008

The erbitus rash can be on the face and sometimes other places. Sort of like
a bad case of acne. I recently came across an article that recommended
starting to treat the rash before you actually get it with doxycycline, an
antibiotic, moisturizers and sunscreen. It seems any recommendations I have
come across about the rash does suggest taking an antibiotic.

msccolon's picture
msccolon
Posts: 1956
Joined: Oct 2004

You have gotten a lot of really good advice regarding clinical trials. I just wanted to add that i have been on Avastin since it was included in my chemotherapy back in 2006. When I was on chemo, of course, it was the FOLFIRI with Avastin, every 2 weeks. I didn't get the Erbitux because I have the K-ras gene mutation. But once the 6 months of chemo was up I have been on Avastin every 3 weeks. I certainly have issues with excess mucous production from my sinuses and could get rich buying into the Puffs tissue company, but don't really have any other issues. I have gotten used to keeping my nasal passages moist by using the saline spray at least twice a day and when they hurt, i use a q-tip covered in neosporin and wipe the inside of my nose. The saline spray also helps with clearing out the thin mucous that tends to coat and then dry in the nose, which helps keep down nose bleeds. When I am on regular chemo with the Avastin, I do bleed more from the nose. You just have to be very delicate when blowing your nose and very aggressive with keeping your sinuses moist. Humidifiers and mist from a shower and/or boiling water really help. I also am now on medication to control my blood pressure, since Avastin can raise your blood pressure, but that's not a problem either. Avastin has shown tremendous promise in extending time between recurrances and has even been approved for use for other types of cancers now. Without trials and feedback from the trenches, there would never be advanced in this fight. You are a warrior and what a wonderful chance for you and your loved ones!
mary

dixchi's picture
dixchi
Posts: 438
Joined: Jun 2008

.....msccolon, have you noticed how much smaller the tissues are these days....
not only smaller but made of flimsier stuff....used to be able to use two
or three times...now use them once and pitch, haha! I have been off treatment
since Dec. 8 and still have nose problems from Avastin, the saline solution is
good idea.

msccolon's picture
msccolon
Posts: 1956
Joined: Oct 2004

That's why I only buy Puffs Ultra! At least I only have to use 1 at a time!
mary

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

Hi Donna,
I just want to say that I didn't read the other posts before I responded to your original post with the "get kras tested" info. It sounds like I'm dense by repeating what some others already said- maybe I am with chemo brain as my influence- sorry!

Lisa

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

Hi,
I'm probably sounding like a broken record to some on this board by mentioning that you should make sure you get kras tested, but I have a feeling not all doctors do this yet. In case you haven't been or don't know about it, you should request this of your doctor before starting on the Cetuximab (which is also called Erbitux). My oncologist put me on this without even knowing about the kras testing and I found out too late that I shouldn't have ever been put on it. Up to 40% of colorectal cancer patients have a k-ras mutation in their cancer cells which means that Erbitux/Cetuximab will do absolutely no good at all for them. In my case, I suffered the infamous "Erbitux rash" for nothing. I was on it 7 weeks before my surgeon intervened and asked if I had been kras tested. It was he who was able to request the test be done (he used part of my removed tumor from 4-1/2 months earlier for the test- I never knew before then that they actually preserve part of removed tumors). I had also heard from several sources before that the worse your rash reaction is, the better it's working. I was a definite example where this was not the case.
Not to freak you out, but just to make you aware ahead of time.
I don't believe there's any kind of tests for the other chemos, although I may be mistaken on that. Again, it's worth asking your oncologist and/or surgeon about.

Best wishes to you!!!!
Lisa

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

My "oops" posting should go after, not before, the "get kras tested" posting.
Sorry for the confusion!

Franko47
Posts: 7
Joined: Feb 2009

we have the simular study at our hospital. after readying the potential risks i found that in my situation.. i have choosed to decine.. we all have different cicumstances and have very hard choices to make.. so far i have choosen no chemo.. i am going to talk with my second oncologist soon and then may go outside my hospital for a second opinion.. i will continue to be open to chemo. providing i can see that it justifies the risks..
my situation is as follows.. i had 1/2 of my large instestine removed.. found in the colon and thru the wall was a t4 stage 2 tumor.. 18 nodes were looked at and they found no abnomal cells.. my liver the same and my chest wall the same.. bone scan neg.. buy they still recommended the study or if not the study one of the other alternative chemo treatments.
i am 62.. i want to know.. and hear from those that have a simular condition and have not taken chemo and those that have.. if i continue without chemo. they will monitor me with blood tests every 60 days.. then if it comes back. i will do the chemo. but now. im thinking.. i may have a couple good quality years.. the risks for me not knowing if it will even make a difference or if theres anything there to kill dont seem worth it... i wish they had better ways of telling or finding cancer cells in our bodies.. but we are where we are.
those that are doing it for the sake of others that come after them. my hat is off to you .. you are heros.. given my age. if i were in my 30s.. then the risk to me, would be worth it.. especially if there was a chance of another 20 plus years..
hugs to everyone
franko

Shayenne's picture
Shayenne
Posts: 2370
Joined: Jan 2009

I just made a separate post about how I don't think I"ll be doing this chemo trial, as my daughter somehow stumbled on an article on msnbc.com that the drugs they want me to try along with my cocktail, is making colon cancer worse, I thought.. wow, strange timing that came up, since I was supposed to meet the clinical trials lady to sign some consent forms tomorrow..guess I"ll just take the cocktail without the "Plus" in it :)

You are only 62! you still have alot of life to go! Welcome to the forum, and you will be talking to some wonderful people here, who have gone not only lived years and years after their diagnosis, but will tell you also that this is not a death sentence! there are so many treatments out there, and chemo isn't what it used to be like years ago. I start it soon, and this forum has helped mentally prepare me for anything that is going to be thrown at me. Why not have chemo? this is what's going to save your life...I'm 44 next week, with 4 kids who, I am not ready to leave yet! A couple years you have?? how do you know? most of the people I been talking too have been living 5, 6, 8 years and still going strong! but you have to try and take the meds, you're supposed to get sicker with the chemo before you better, but don't give up! there's so many advanced treatments out there! go for it and try to find what's best for you! but if you need chemo, take it, this is what will shrink those nasty tumors so they can hopefully operate on you one day to remove it! I know it's hard to not sound hopeless, I get like that too, but there's just way to many miracles on this board, and you need to read their stories...don't ever give up your faith or hope! I'll be here to hold your hand, as we walk through these unknown territories together!! just don't lose the hope!!

Hugssss to you!!
~Donna

Subscribe to Comments for "My 1st Oncology Appt"