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Tomorrow is a big day---UPDATE disappointing

traci43's picture
traci43
Posts: 775
Joined: Jul 2007

Well it's here. Tomorrow I go to San Diego to consult with Dr. Lowy at UCSD. He will be the tie breaker--surgery then chemo (what I want) or chemo then possibly surgery (what the surgeon wants). This is my second recurrence, my first after HIPEC just over a year ago. Seems like it's still in the abdominal cavity but each scan shows more lymph node involvement, only one tumor though. CEA rising slower than previous recurrance. Scared, worried, wondering what's going to happen.

Still have to go by my HMO and pick up a copy of my last two PET Scans. They were copied but they couldn't find them on Friday. Grrrrr! Will be there at 8 am to hopefully get them or I will have to postpone the appointment which is at 12:30 and a two 1/2 hour drive from home.
*******************************
Update--got the scans and made it to the appointment on time. Dr. Lowy agrees with my surgeon--no surgery, just chemo. I am sooooooo disappointed. I understand why better now, but it still sucks. The rationale is that the cancer has gone to the lymph nodes (specifically illiac lymph nodes) and that means it is systemic and surgery will only remove visable disease. Also surgery suppresses immune system and increase growth factors to heal--both are conducive to cancer growth. So, I will try to be a good girl and take my meds.

I am changing my diet to no sugar, more veggies, less meat and am looking into supplements to help the chemo be more effective and to make my body less hospitable to cancer. I'm disappointed but not willing to give up yet!

biglaur's picture
biglaur
Posts: 72
Joined: Apr 2010

You might try and stop in to visit Dr. Arno Mundt...radio-oncologist at Moore's. He's a genius and a very cool guy. Thinks way outside the box and might have another thought as a possible treatment option. Always worth some new input. He did miracles for me. Laurie

traci43's picture
traci43
Posts: 775
Joined: Jul 2007

I'll keep him in mind. My referral is only for Dr. Lowy but I'll ask him. my tumors are very low and radiation is a possibility.

plh4gail's picture
plh4gail
Posts: 1238
Joined: Oct 2010

Traci, I'm very new on here and I'm also new with my cancer diagnosis. But I am in treatment for colorectal cancer. I don't know if your's is similar to mine, but it sounds like it may be. I did chemo and radiation to shrink my tumor first ( surgeons decision/suggestion) and this gave the surgeon more room to work with for my surgery to remove the tumor. I did have surgery on Oct 8th.

Gail

traci43's picture
traci43
Posts: 775
Joined: Jul 2007

Gail - Mine is a recurrance and is not on the colon at all. It's a 2 cm tumor very near the rectum with as of last count 3 lymph nodes involved. It seems my two recurrences have both been in the peritonal cavity and not involving in organs, for which I'm thankful. Although, I understand that liver or lung tumors are easier to treat than this.

I hope your surgery went well and you are doing well. Traci

plh4gail's picture
plh4gail
Posts: 1238
Joined: Oct 2010

Oh I see...well I do wish you the best of luck. Even though I am new with all of this, I feel like I have been through so much. I have so many questions myself, but feel I may have some info for other's. Thought's, well wishes, and prayers are with you!

Yes, for my surgery, Dr says he got it all. I hate the iliostomy, and I'm very glad it will be reversed soon. I give so much credit to all the ostomates out there!

Gail

traci43's picture
traci43
Posts: 775
Joined: Jul 2007

Gail - Sounds like you're doing great. Hope the reversal goes well. I was concerned about the possibility of having one if I had had surgery, so that's a small relief to me. Don't be afraid to ask questions or post comments. We all learn from each other. Thanks for speaking up and trying to help. Traci

Lori-S's picture
Lori-S
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Joined: Sep 2010

I just wanted to welcome you to the board.

plh4gail's picture
plh4gail
Posts: 1238
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Hi and thank you so much! I think this board is going to become a dear friend to me!

Gail

AnneCan
Posts: 3692
Joined: Oct 2009

Good luck with the consultation!

plh4gail's picture
plh4gail
Posts: 1238
Joined: Oct 2010

Good luck with your appointment! .....Gail

pepebcn's picture
pepebcn
Posts: 6352
Joined: Aug 2010

Have a big hug!

Lori-S's picture
Lori-S
Posts: 1287
Joined: Sep 2010

I hope that you get those scans and make it down to SD in time. I will be thinking of you and hoping for the best.

Crow71's picture
Crow71
Posts: 681
Joined: Jan 2010

Hey Traci - I hope you have a successful day today.
Let us know how it went when you get a chance.
Roger

traci43's picture
traci43
Posts: 775
Joined: Jul 2007

Cool name. As you can see it didn't go as well as I hoped. I do trust Dr. Lowy and wish I could have had surgery. I hope the chemo does the job this time.

When did you have HIPEC? How are you doing?

KathiM's picture
KathiM
Posts: 8077
Joined: Aug 2005

Please keep us posted!!!!

Hugs, Kathi

AnneCan
Posts: 3692
Joined: Oct 2009

Hugs + good vibes to you today!

herdizziness's picture
herdizziness
Posts: 3642
Joined: Apr 2010

That you get those scans in time and make it to your appointment.
I wanted to wish you luck, and am thinking about you.
Winter Marie

traci43's picture
traci43
Posts: 775
Joined: Jul 2007

bump

Lori-S's picture
Lori-S
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Joined: Sep 2010

It's good to hear that you made it to SD on time. I'm sorry that you can't just have your surgery as you wanted. I'm sure that with the lymph node involvement the doctors really want to treat that as effectively as possible. Be a good girl and take your medicine. :)

I always think that supplementing and eating right is a good thing. Don't worry so much about all sugar as it's the refined processed sugar that seems to be the worse. Our bodies do need sugar ... just not all the white refined sugar that seems to be everywhere. Let us know what you find out in regards to the supplements you take and remember to let the onc know which ones so they help treatment and not hinder it.

pepebcn's picture
pepebcn
Posts: 6352
Joined: Aug 2010

I got them affected too , in retroperitoneal area, we are radiating it and once radiated will remove it with surgery, so nobody told me about what you have been told! what about other opinion?
Have a big hug.

traci43's picture
traci43
Posts: 775
Joined: Jul 2007

Pepe - I asked my HMO surgeon about radiation as mine are in the same general area as yours. He did not want to do it. I was so devastated yesterday that I forgot to ask Dr. Lowy. I've been told that I don't want radiation as it really bothers your rectum. If it could kill the cancer, I'd do anything. I'll ask again about radiation. Thanks, Traci

pepebcn's picture
pepebcn
Posts: 6352
Joined: Aug 2010

Traci : Knowing as I know my docs, onc,radio oncologist ,and surgeon lm sure they would avoid me the radio if they wouldn't be pretty sure that lymph nodes can be irradiated successfully ,actually they have explained to me lots of successful stories.This is just to treat the lymph mets ,so may be l had not explained it properly , but you know that this is a condition to be operated of any other organ!
I would suggest an app.with a radio oncologist !
Hugs!

Buckwirth's picture
Buckwirth
Posts: 1272
Joined: Jun 2010

I have stage IV rectal, wit no organ mets. Currently in radiation, the first four weeks were uneventful, but this last week took the pain to new levels, but even that is limited to bowel movements. I am surprised your HMO doc feels that way...

pepebcn's picture
pepebcn
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Cheers!

Buckwirth's picture
Buckwirth
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Bowel movements are excruciating, having to pass through an internal sunburn is not pleasant. It takes me most of the day now to recover.

traci43's picture
traci43
Posts: 775
Joined: Jul 2007

That's awful Buck, but I guess if it gets rid of the cancer and heals it will be worth it. Sending out cool soothing vibes for you right now. Traci

traci43's picture
traci43
Posts: 775
Joined: Jul 2007

Not sure if it's the way my onc feels, or the radiation oncs at my HMO. My surgeon said the same thing. Still my medical onc is all for the referral and trying to find something that works. If radiation is a possibility I'll be wanting to hear from folks like you and pepe who have had radiation. Thanks, Traci

traci43's picture
traci43
Posts: 775
Joined: Jul 2007

Yeah, I'm more concerned about the white sugar, flour, etc. than sugar in fruit. I'll definitely be running the supplements by the board once I her from the Doctor. My appointment is not until November 22. And yes, I will be a big girl and take my medicine starting Friday. It will be XELIRI with Avastin (I think I spelled it right). Not had this before, hope it works. All previous chemo was FOLFOX with and without Avastin.

LivinginNH's picture
LivinginNH
Posts: 1458
Joined: Apr 2010

Hi Traci,

I can't offer any advice, but I just wanted to let you know that my thoughts and prayers are with you. Best wishes always, Cynthia

traci43's picture
traci43
Posts: 775
Joined: Jul 2007

thanks!

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

something to check out...ire nanoknife...for the tumors...electricity induced to the tumors by electrodes slid into the tumor itself and it kills them from the inside out with absolutely no surrounding tissue damage. Not like others that either freeze or burn in which surrounding tissue does take on collateral damage...ire nanoknife does not...I may be bringing this up to often but its another possible option to look into...If your Dr does not like it, then maybe you need to make a call and see if maybe the hospitals that do offer it might want to try what yours has no accessibility to...Its a longshot but not as long as you might think, all they can say is no, and you have already heard that so whats to not gain from it ???

Love and hope to you and yours, Clift

traci43's picture
traci43
Posts: 775
Joined: Jul 2007

Clift - that's soemthing new. I'll mention it tothe surgeon when I see him. Thanks & take care, Traci

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

he may not if its not available to him for you...You may need to take the bull by the horns and make all arrangements for this without consulting him if he says no...remember he is suppose to work for your best interest. Are you happy 100% and trust him then I say great but if you have any doubt all it is is a call.....Love and Hope, Clift

AnneCan
Posts: 3692
Joined: Oct 2009

I am sorry for your disappointment. I am thinking of you.

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

I'm sorry you didn't get the answer you want, but hopefully the meds will help your situation and enable you to get ahead of the game.

*hugs*
Gail

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

Hi Traci,

I'm sorry you had disappointing news confirmed from Dr. Lowy. Dr. Lowy was my surgeon when I had my liver resection in May '08. I really liked him and loved how he spent so much time with me each appointment.
I do want to point something out, however. Dr. Lowy is a surgeon- surgeons usually only think in terms of surgery or not- they are not going to be someone to recommend other types of procedures. I would still check into the stereotactic radiation that they do at Moores/UCSD and also check out cyberknife. There is a cyberknife center in Vista in north county and another in San Diego. It wouldn't hurt to contact a center and send them a copy of your latest scans and see what they think. Also, look into the nanoknife that Buzzard just mentioned. He mentioned it to me also & I am going to look further into it after I see what my situation is (scan tomorrow, results Friday).
I did google "nanoknife locations" and found a list of the places that do nanoknife in the country. The only location in California that does nanoknife according to this list is at UCI (Univ of Irvine, in Orange County).
I actually sent an email inquiry about it a couple of days ago to them, but have not received a reply yet.
The plus of doing something like radiation, cyberknife, or nanoknife (electricity, not radiation) is that you could do it without having to stop the chemo. For surgery, chemo has to be stopped several weeks before and after surgery.

Take care and keep searching out options-

Hugs,
Lisa

traci43's picture
traci43
Posts: 775
Joined: Jul 2007

I will continue to research other options. I am glad to be starting something, even if it's jsut chemo. There's always the worry that it's growing inside. Someone had suggested a Doc at UCSD/Moore's but I was so devastated by Dr. Lowy's recommendation that I totally forgot to ask about it. I think I'll start this line of inquiry with my medical onc rather than the surgeon. I'll keep you all posted. Thanks, Traci

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

Traci,

Although my regular onc is not at UCSD, I have consulted a few times with Dr. Fanta at UCSD. My regular onc up in Vista consults with him regularly about me & Dr. Fanta is nice enough to keep that communication going even though I'm not a paying patient to him (my insurance allows me to consult w/ someone outside of my main network once a year). I had an appt set up w/ him a few months back and insurance denied it. I was ready to pay cash for it, but Dr. Fanta called me the evening before and said we could talk about it over the phone. He spent a good 1/2 hr on the phone w/ me that evening all for no payment. I have a friend who goes to him regularly and he had recommended the radiation onc there to her. This friend loves the radiation onc (who, by the way, travels to Encinitas in north county at the San Diego Cancer Center a couple of times a week- so it would save you some miles there). I think his name might be Dr. Lawson. Do follow up with that, even once you've started on the chemo.

Hugs,
Lisa

traci43's picture
traci43
Posts: 775
Joined: Jul 2007

I did ask my medical onc to refer me to a radiation onc, the first step. If I don't like what I hear there, I will suggest the Dr. at UCSD. I'm willing to pay out of pocket for a consult if my HMO won't pay. I'm not givcing up this easil. Thanks, traci

Annabelle41415's picture
Annabelle41415
Posts: 6179
Joined: Feb 2009

It's hard when you have an opinion about something and then the doctor you see has a different one. Guess you just have to be your own advocate. Hoping that whatever you decide, it's the right decision that you can be happy with. Good luck and will be thinking of you. And please don't give up, you have much to live for. Just remind yourself of that beautiful picture that you have showing us all how happy you are.

Kim

mom_2_3
Posts: 964
Joined: Nov 2008

I am sorry that you didn't get the news that you wanted to hear. I know that that is very hard. I have no practical advice for you other than to continue on to another opinion if possible.

I know I have mentioned it before but the father of one of our best friend's was diagnosed with Stage IV colon cancer many years ago. The cancer went from his colon right to the nodes in his neck and chest. He had one of the neck nodes biopsied to confirm the diagnosis. At the time the doctors refused to operate on the colon as they told him it wasn't necessary and that he needed to be treated for the systemic disease. Long story short is that he did 6 months FOLFOX/Avastin (which was new at the time) and the nodes all disappeared. None were removed surgically. He then had his colon surgery. This past April marked his 6 year NED.

You can do this. Chemo sucks, no one can really say otherwise but definitely look into alternative methods to use concurrently. Please advise your doctor, however, if your plans include any kind of supplements.

Good thoughts and prayers to you,
Amy

traci43's picture
traci43
Posts: 775
Joined: Jul 2007

I'm really hoping that the chemo does knock out the lymph nodes so the can do something about the 1 tumor. FOLFOX no longer works for me so it's on to XELIRI. Hopefully, the inirocetan will knock the cancer out. Traci

pepebcn's picture
pepebcn
Posts: 6352
Joined: Aug 2010

Which nearly the same as yours, and it worked very very well! .
I'm sure will works with you too!
Hugs!

Nana b's picture
Nana b
Posts: 3045
Joined: May 2009

Just letting you know that I am thinking about you...hope it works out for you.

dorookie
Posts: 1736
Joined: Jul 2007

Just wanted to let you know I continue to hold you in my prayers, I am not on here as much, but for sure wanted to let you know I was thinking of you. I am awaiting my results on Tuesday, I have been clar for over a year now, and pray that continues.

Stay strong, keep your faith, and live...

God Bless
HUGS
Beth

traci43's picture
traci43
Posts: 775
Joined: Jul 2007

Beth - Lots of prayers and good wishes for a wonderful report! Take care, Traci

pepebcn's picture
pepebcn
Posts: 6352
Joined: Aug 2010

I'm praying for a clear scan and good results!
Hugs.

AnneCan
Posts: 3692
Joined: Oct 2009

May your "clear" run continue always.

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