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saw my Dr. today

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

Well, I had my Dr. visit with my oncologist today. Since I already picked up the CT scan report on Wed, he didn't have to spend time explaining that to me. His demeanor was positive and we spent time discussing his views on how tragic it would be if the U.S. ends up with national healthcare. He said he's currently treating three patients from Canada and one from London who are unable to get Avastin where they're at because of the government waiting time. Anyhow, we did also have plenty of time to discuss me and "what next", as well!

He wants to order a PET scan for my lungs next to see if what remains there lights up on the PET or not. He's thinking it probably won't, but wants to be sure. His thoughts are if nothing lights up (following that nothing has grown or changed in size in these past 4 months since my last scan), then we'll start me on maintenance. He wants to put me on Avastin only, once every three weeks. I asked about the benefits of taking Xeloda along with the Avastin. He wants to give my body a break from all the chemo I've had these past 7 months, and just do the Avastin, which is a biologic agent that prevents the blood supply from getting to the cancer cells. It supposedly isn't as hard on the DNA of healthy cells, like the Xeloda would be. We'll still discuss that further before deciding, because I'm a little nervous to "let it go", not that taking Avastin only would be "letting it go".

If the PET scan shows all the little guys lighting up, then he said we'd need to do more chemo, but a different agent than what I've taken, since what I've taken hasn't done the job. I asked him "what's left? Haven't I taken pretty much everything there is?" He said that there are some clincal trials with a couple of newer chemo/biologic agents. I, unfortunately, forgot to write down what it was & now can't remember.

If the PET scan shows just a couple of nodules lighting up, then he said we'll evaluate them to see if I might be a candidate for either cyberknife or RFA. He said he hasn't sent any patients for RFA for over a year now & that he's sent more than 30 patients in the last year for cyberknife. Cyberknife is kind of like sterotactical radiation, but a gold "feducial" (small bead) is implanted in the nodule and the radiation "tracks" the bead when the patient moves, breathes, etc. & the radiation is much more exact and specific to something small.

I am hoping, of course, that the PET will show nothing light up in my lungs. I now feel that there are several things that still can be done if something does light up, however.

If I were still doing the same chemo I've been doing for the past several months (irinotecan, Avastin, and Xeloda), I'd be due to go in again for it this coming Tuesday. It felt so good to be told that I didn't need to come in at all this week- I get to give my body a nice break! I'm looking forward to getting time to let my sore toes and cracked finger tips heal (Xeloda side effects)! Maybe I'll even get some of my energy back!

I don't know yet when the PET will be. He has to put the referral in to my insurance. Hopefully, they'll comply quickly and it can get scheduled within a couple of weeks. I'll certainly let you know when I find out.

To steal (borrow!) Lance's signature...

"Cheers!",
Lisa

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

Awwww... that is a shame that your onc has misinformation about other countries national healthcare plans, Lisa. I can't speak for England... I know they had a fantastic one until it got deregulated somewhat with Thatcher, but then they have been trying to get it regulated again. Not sure where they are with that and because I don't know, I would never jump to assumptions... other than I know when something has been regulated and you then deregulate, chaos can ensue. As for Canada... there's no wait list for Avastin. The drug is very much available in Canada, just as available as it is in the States. Most provinces medical cover the cost for it (see article), but there are still some provinces lagging behind, which means the patient from those provinces has to either have Extended Health Care insurance coverage or they have to pay for it themselves (not unlike American patients who don't have health insurance). But for patients in provinces that don't cover it, going down to the States is NOT the answer since not only would they have to pay for the drug and travel expenses, they'd also have to pay the oncologist and/or medical staff who give them the infusion. When I hear misinformation like this, I can't help but wonder the reason behind it... and it makes me question what a doctor/oncologist/specialist has to lose by telling his patients that there are long wait lists for much needed drugs in other countries, when that is not the case.

Hmmm... a PET scan for just the lungs is a mighty expensive scan ($4000 - $7000) when he's already thinking it probably won't light up... unless he's wanting to check that there are no other isolated areas in your body, not just the lungs. I know you have told us in another topic how large your largest lung nodules are, but the numbers escape me right now... are they over 5mm? My understanding is that anything under 5-6mm will not light up a PET scan so it would be a shame to have this expensive scan and not know anymore than you already know :/

But, I'm glad your body is going to get a break from the 7 months of chemo! A break is as good as a rest ... so to speak :) I think you mentioned that the Xeloda has caused you side affects what with the peeling skin, etc. Did you happen to have any side affects from the irinotecan? I haven't heard anyone on these boards comment about side affects from that one... or is it always in combination with another chemo/drug so you wouldn't know which one causes particular side affects? The reason I ask, I know my onc says that if I need to go on chemo for the lung nodules, then it will be a combo of irinotecan and avastin... both are ones I haven't had before so I guess I'll just have to cross that bridge when I get to it. No sense worrying about side affects when I'm not even on it yet! LOL!

Anywho... you know I wish you all the best of the best... and you simply MUST MUST MUST keep us posted on when your PET is, what the results from that are, and then what the ongoing plan will be :)

Hugggggggs, my friend!

Cheryl

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

You know that you are always in my prayers and know that God is always with you....You will be fine and everything will be ok...Trust Him....God Bless you Hun....Prayers are in for a clear PET Scan.......

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

Funny how when our chemo ends, the anxiety begins about not being on it.
We hate the side effects but know that we are actively doing something
to treat the ca and then we are let loose for our immune system to do its
work and we pray that it does. Very much a roller coaster but it is great
to also feel free of chemo in our system. The report sounds hopeful;
like there may not be anything major happening and if there is there are
options. That is a relief in itself.So I am glad for you.

As far as the doc's comments about how horrible national health care would be,
I don't think anyone has said it would be a carbon copy of any other country's
program. You know us U.S. folks are quite the independent ones and want our
own version. For anyone here not to be able to get treated medically though
is also not speaking well for the premise that all of us are created equally
and have rights and freedoms available to all....especially when that medical
care is a matter of life or death. And the enormous amounts of money that
is beng spent or wasted or underutilized has got to be the major focus of the
plan.....my two cents.

Barbara

VickiCO's picture
VickiCO
Posts: 934
Joined: Oct 2008

As Buzzard says "God Bless ya Hun!" We are here for you. Keep us informed and know that i think of you every day.

Many hugs...Vicki

maglets's picture
maglets
Posts: 2596
Joined: Jun 2006

Lisa that all sounds positive and good news. Good girl. Thinking about you.

Hugs

~Mags~

kimby's picture
kimby
Posts: 804
Joined: Oct 2007

Lisa,

I'm so happy for your good news! I know the PET will tell the whole story, but for now - CELEBRATE! Take the chemo break to enjoy yourself and look at all the positives going on right now. Seems that our journeys have been similar, so I know how much little steps mean.

You will continue to be in my prayers and thoughts. This is good news!

Kimby

dianetavegia's picture
dianetavegia
Posts: 1953
Joined: Mar 2009

Lisa, I've not faced any new scans yet, so cannot identify with the fears but know they'll come soon enough. Praying your nodes will not light up and that all will remain well!

Prayers and a big hug,
Diane

rrob
Posts: 160
Joined: Nov 2007

Lisa,

Sorry, I've been out of touch for a couple of days. It sounds as if your news is truly something to celebrate. If you have been stable and your oncologist is ready to treat you with Avastin only, that sounds like great news. I'll be praying for your PET--you have been in my thoughts so much!

Rebecca

Glv49
Posts: 206
Joined: May 2005

I will be praying for you for a clear PET scan.. God Bless You.

Gail

usakat's picture
usakat
Posts: 625
Joined: Jul 2006

Hi Lisa,

From what you write...I think I like your oncologist! He seems careful and very considerate. If I may ask, where are you being treated? I was treated originally at Hoag Cancer Center in Newport Beach...they were excellent! My oncologist was fantastic and my chemo nurse is one of my most favorite people on the planet. My GI doc was great too...in fact I told my dad to think about seeing her too - he lives in Fallbrook - but instead he went to someone a little closer to home. He had a scope just a few weeks ago and thankfully all is well with dear ol' dad (he was dx with a benign tumor two months before my cancer).

Anyway, Lisa...glad to hear you might be getting a little break from the full scale shock and awe of the chemo combos. I'm sure you'll begin to bounce back quickly. And hey, for relief from Xeloda side effects, check out Mary Kay's Extra Emolient Night Cream - it's a dream and will give you instant relief...and it smells good too!

http://www.marykay.com/skincare/moisturization/10425800/10425800/default.aspx

I'll be keeping you in my thoughts and prayers for restored health and renewed well being!

Hugs,
Katie

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

Lisa,

You enjoy the break and let your body get some rest. Hopefully you'll get only good news from the Pet scan. I'll be praying!

*hugs*
Gail

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

HI Everyone,

Thanks for your comments! It's always so nice to get such great feedback from all of you.
Cheryl, I don't know about the "misinformation" on Canada's/Englands's health care system by my oncologist. I imagine that would be frustrating to you, who obviously are happy with Canada's system- in your province, at least. I guess all he knows is that he has three patients he's treating who are from Canada and they complain about it & that's where he's gotten his info from, I guess. He didn't say what provinces they're from.

USAKat,I had forgotten you said a while back that your dad lives in Fallbrook. I wonder if he got his colonoscopy at the same place I went- Dr. Rothman in Oceanside by Tri City Medical Center. You asked where I'm treated- my oncology office is Pacific Oncology- technically in Vista, but across the street from Tri City in Oceanside, on Thunder Dr. I have mixed feelings about my oncologist. He's always had a great attitude, which I've always very much appreciated. He has, however, dropped the ball a few different times on things such as not knowing to k-ras test me before putting me on Erbitux (I won't got into that again- it makes me upset) and he also failed to ever even mention putting me on adjuvant chemo following my liver resection. I was pleased with everything he said and talked about doing this last appointment, though.
At the same time, I faxed my scan report down to another oncologist whom I've consulted with at UCSD/Moores cancer center.
You mentioned you went to Hoag in Newport Beach. I have a cousin who used to work in the oncology wing there, but she's not worked there for a while now. She always spoke highly of that hospital when she worked there.

Everyone else- thank you for your comments, thoughts, prayers, etc.
We all will press onward together- thanks again & I am definitely keeping you all in my thoughts and prayers. I look forward to hearing of all of your progress as well- especially those of you who have scans and surgeries scheduled soon.

God bless,
Lisa

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