Oncologist's Opinion....

idlehunters

Met with my Onc yesterday and this is what he came up with. I just had a PET/CT done at a different facility and read by a different set of doctors. I do that so I get different eyes on different tests. More than 1 opinion is important to me. The Rad Onc at St. Louis Univ read the scan and said I had a recurrence with 4 new lung mets. Most of you already know this. My chemo Onc over here on this side of the river was not so eager to agree and asked for a week to evaluate all my scans from the past 9 months and compare apples and oranges.

His findings: 2 of the 4 "new" mets he feels are definately scar tissue. These are the ones that were concerning me most as 1 of those is very close in the Hilum area of the lung and not treatable by anything but chemo. He said these areas have a faint glow but he feels this is from Cyberknife radiation. The other 2 mets are indeed mets...both located in the lower left lung. HOWEVER, He seens these mets on one of my scans...actually a few of my scans...several months back...and he says himself...and everyone else kept blaming it on Cyberknife scar tissue and now he says he believes thru comparison that these are NOW and ALWAYS have been....mets.... BUT...the good news here is they have not grown in size or shape in all these months....which tells him they are either VERY slow growing....or NOT cancerous. Both are under 1cm. One dimly lights up and the other is a little brighter....again, could still be radiation related. My CEA last year when I had Cyberknife was up over 10. After Cyberknife it went down to 3.8. In April it rose to 5.9 and now it's 7.5. My Onc says that could be from a hundred different things and that number does not concern him. He said once CEA gets over 10 its usually a recurrence but no concern under 10. NOW THATS JUST ME! We all have different CEA patterns and thats just how it is with me. ANYTIME i get over 10 in the past its ALWAYS been a recurrence. I have been thru this with 3 recurrences now so that is MY pattern.

He gave me 2 options. #1- Start a new chemo (Folfox) NOW. He would want me to stay on Vectibix and would add a little 5FU with it on a every 2 week regime...no pump....OR #2- Do Nothing right now...just stay on what I have been doing...which is just Vectibix every 2 weeks.... and keep an eye on CEA. If it keeps going up...past 10...THEN start the Folfox.

I opted for #2. Since nothing is really 'FOR SURE" at this point I sure don't want to go putting that nasty chemo in me if I don't have to. Folfox scares the snot outta me!

When I first started seeing a TCM doc 3 months ago he asked what I wanted to accomplish. I told him I was itching from the Vectibix. He done accupuncture and gave me some herbel pills...GONE.I told him the 3 MAIN things I wanted to address was to fine tune my immune system and make it the best it could be, to work on inflammation in my body as I have had Bursitis in both hips since I started chemo and I would like to halt the cancer in my lungs. I told him I know there is no "cure" for cancer but if we could just stop it in its tracks i could "LIVE" with what is there.

He made me up my own "personal" herbs to treat these complaints. Well, my CBC last week was the BEST I have had since DX. ALL levels in excellent range except Neutraphils which was a tiny high(1.2 over range). My scan 2 weeks ago showed NONE...NO BURSITIS...wow! that has showed on every scan for 2 years!!! That really blew me away. As far as my lungs.... I asked that cancer be halted...what did my Onc say???.... NO GROWTH on those spots! WoW again....thats kinda freaky huh? I may be reading more into this than what really exists....but at this point I am real happy with my TCM doc. Time will tell...

I am very happy with this news. I feel I have a window of opportunity. I will be meeting with my TCM doc next week and we will re-evaluate my situation and adjust where necessary. I will be adding a few more things that I have been researching such as Cimetidine, K2,K3,K5 and Graviola.

I feel great other than a few issues with my back that I am taking care of. I have a few vacations to get planned for this summer as well as CP10 in New York and then there's my daughters wedding in December that now has a guest list of almost 500. I don't have time for Cancer so it just needs to stay the hell outta my way!!! :-)

LOVE ALL YOU GUYS!!!!

Jennie

Sundanceh

Jen
Option #2 sounds good to me as well...let's geta a saddle on that one and take a ride on that. Watching a little extra to check growth is a good plan of attack sometime...better to wait a little than to go rushing in....cause not enough would have changed for it to be a game changer....if something popped you are there as usual...just depends on growth...when you see them doubling in size every scan cycle, that's the red flag and you know those lumps on the lower part of your lung will be wedge resection more than likely.

I've had 7 wedge resections done and two ribs removed for $hits and giggles:)

Tumor if they get big enough can wedge into things and create trouble....so it may involve surgery, which would be good...vats, robot, or open throacotomy...I actually did better with the open, even though we made medical history for our area with the robot.

Mass is mass though, cancer or not and there will come a time even it's growing rapidly or even slowly and steadily, that it will need to be cut out, if possible.

I'm not sure what effect chemo would have on a benign mass...maybe shrink? or calicify?

Good luck, Jen

LOL! I'm still up too for a minute and saw you online.....getting ready for bed...tooo much going on these days, new drama and new stories everyday, just staying with it.

Have a nice vacation this year...
-c

idlehunters

Sundanceh said:

Jen
Option #2 sounds good to me as well...let's geta a saddle on that one and take a ride on that. Watching a little extra to check growth is a good plan of attack sometime...better to wait a little than to go rushing in....cause not enough would have changed for it to be a game changer....if something popped you are there as usual...just depends on growth...when you see them doubling in size every scan cycle, that's the red flag and you know those lumps on the lower part of your lung will be wedge resection more than likely.

I've had 7 wedge resections done and two ribs removed for $hits and giggles:)

Tumor if they get big enough can wedge into things and create trouble....so it may involve surgery, which would be good...vats, robot, or open throacotomy...I actually did better with the open, even though we made medical history for our area with the robot.

Mass is mass though, cancer or not and there will come a time even it's growing rapidly or even slowly and steadily, that it will need to be cut out, if possible.

I'm not sure what effect chemo would have on a benign mass...maybe shrink? or calicify?

Good luck, Jen

LOL! I'm still up too for a minute and saw you online.....getting ready for bed...tooo much going on these days, new drama and new stories everyday, just staying with it.

Have a nice vacation this year...
-c

Thanks Craiger!!
Your comment made me laugh cause it reminded me of something I seen on FB

"Is everything REALLY $hits & Giggles if you Giggle & $hit?" LOL...so true in our world!!!

Love ya Craiger

Jen

pepebcn

idlehunters said:

Thanks Craiger!!
Your comment made me laugh cause it reminded me of something I seen on FB

"Is everything REALLY $hits & Giggles if you Giggle & $hit?" LOL...so true in our world!!!

Love ya Craiger

Jen

Hi jennie my dear , i agree with craig that option 2 sounds
great,on the meantime try to forget about this and concentrate in all your future plans!.
I will be praying for you hoping is just benign spots!
Hugs my dear friend!

Lovekitties

Dear Jennie
Thanks so much for posting this update...I was gonna give you the weekend before asking how it went.

Sounds to me like you and your doc have a good plan about waiting to see what happens. How long until next scan or CEA check?

It sounds as if your daughter's wedding will be an event to remember...and a heck of a lot of work!

Glad to hear that your TCM doc is working out and his treatments are working for your needs.

I know you are a lady on the go, so just keep staying one giant step ahead of that cancer.

Hugs and love ya much,

Marie who loves kitties

janderson1964

Lovekitties said:

Dear Jennie
Thanks so much for posting this update...I was gonna give you the weekend before asking how it went.

Sounds to me like you and your doc have a good plan about waiting to see what happens. How long until next scan or CEA check?

It sounds as if your daughter's wedding will be an event to remember...and a heck of a lot of work!

Glad to hear that your TCM doc is working out and his treatments are working for your needs.

I know you are a lady on the go, so just keep staying one giant step ahead of that cancer.

Hugs and love ya much,

Marie who loves kitties

I have agree with option 2.
I have agree with option 2. Vectibix/erbitux seems to be workin good for Phil as well. Avoid chemo when you can. I am really struggling with chemo right now. Especially when my most recent scan was still clean.

Jeff

lauragb

Sounds like a good plan,
Sounds like a good plan, Jennie. Your TCM treatment sounds interesting....

Light and Love,
Laura

jjaj133

Great news, you made my day.
Great news, you made my day. continue to feel well, enjoy your vacations and buy an amazing outfit for your daughters wedding.
Love you, Judy

son of hal

I like options.... I'll take what's behind door #2
I like the sound of this post much better than your other one. You continue to have a great attitude and it helps so many others to see it shine. I sounds like you have a good plan and a busy year ahead. It seems you understand that the essense of life is to actually LIVE, not just exist, and you look to be living pretty good. That's important for people to see.
Take care, CJ

smokeyjoe

son of hal said:

I like options.... I'll take what's behind door #2
I like the sound of this post much better than your other one. You continue to have a great attitude and it helps so many others to see it shine. I sounds like you have a good plan and a busy year ahead. It seems you understand that the essense of life is to actually LIVE, not just exist, and you look to be living pretty good. That's important for people to see.
Take care, CJ

I say reserve the chemo. for
I say reserve the chemo. for when it's active.....if it's sitting there not doing anything why do chemo. right now. He's gonna watch it and your CEA, go for the chemo. or surgery when need be.

sdp

TCM - phone or emai
Hi am based in India .

I got some herbs yo make huang Qin tang but don't know how.

The herbs yo make it I got thru a friend who visited china and he ad great difficulty getting it due to language problem and they could explain the proportion of herbs to put and boil etc yo create the concoction .

Can u pl help by sending me info of your TCM so I can ask him info on the same Or if possible I would appreciate if u could ask him and help me out.

THANKS

SDP

sdp

TCM - phone or emai
Hi am based in India .

I got some herbs to make huang Qin tang but don't know how.

The herbs to make it I got thru a friend who visited china and he ad great difficulty getting it due to language problem and they could not explain the proportion of herbs to put and boil etc yo create the concoction .

Can u pl help by sending me info of your TCM so I can ask him info on the same Or if possible I would appreciate if u could ask him and help me out.

THANKS

SDP

John23

sdp said:

TCM - phone or emai
Hi am based in India .

I got some herbs to make huang Qin tang but don't know how.

The herbs to make it I got thru a friend who visited china and he ad great difficulty getting it due to language problem and they could not explain the proportion of herbs to put and boil etc yo create the concoction .

Can u pl help by sending me info of your TCM so I can ask him info on the same Or if possible I would appreciate if u could ask him and help me out.

THANKS

SDP

SDP -

See the following links for the formulas. The word "tang" denotes a broth
decocted (cooked from) the herbal mixture.

huang qin 黃芩

e jiao huang qin tang 阿膠黃芩湯

You should have a qualified TCM practitioner, or an experienced
herbalist to call on, should problems arise. Self-medication is
not always a very good idea, unless you are well experienced
with herbal formulas and are aware of the ramifications of using
the wrong herbs, the wrong quantities, or the taking the herbs
for too long a time.

Best of health to you,

John

Kenny H.

John23 said:

SDP -

See the following links for the formulas. The word "tang" denotes a broth
decocted (cooked from) the herbal mixture.

huang qin 黃芩

e jiao huang qin tang 阿膠黃芩湯

You should have a qualified TCM practitioner, or an experienced
herbalist to call on, should problems arise. Self-medication is
not always a very good idea, unless you are well experienced
with herbal formulas and are aware of the ramifications of using
the wrong herbs, the wrong quantities, or the taking the herbs
for too long a time.

Best of health to you,

John

I to had seven mets to lungs
I to had seven mets to lungs and Onc here said was inoperable. Went to MD Anderson for a 2nd opinion & put me on Avastin/Irinotecan for 10 rounds and 2 nodules cavitated (gone!) and dr there wants to operate on one lung in July (the other one later)

Surgery is your best option to totally getting rid of them, said would only lose 5-10% of lung function which is not bad. Would recomend a 2nd opinion at a major cancer center near you. They are much more aggressive for your cure and they gave orders locally for treatments so you only have to visit top dogs there every 3 months.

Annabelle41415

Scans
Sorry they found something new but liking the option of just waiting for now and keeping the treatment that you are on. Sounds like a good plan to just watch and then react, if need be. Wow you have a busy year coming up and so glad your spirit is great.

Kim

idlehunters

Kenny H. said:

I to had seven mets to lungs
I to had seven mets to lungs and Onc here said was inoperable. Went to MD Anderson for a 2nd opinion & put me on Avastin/Irinotecan for 10 rounds and 2 nodules cavitated (gone!) and dr there wants to operate on one lung in July (the other one later)

Surgery is your best option to totally getting rid of them, said would only lose 5-10% of lung function which is not bad. Would recomend a 2nd opinion at a major cancer center near you. They are much more aggressive for your cure and they gave orders locally for treatments so you only have to visit top dogs there every 3 months.

Hey Kenny....
GREAT news about surgery in July!!!! I do have the option of surgery as well but at this point I am going to hold off until I know for sure what I am dealing with. I did not get the good % rate as you got on lung function loss. However, I already have some loss due to previous procedures. As much and as frequent as I have lung recurrences I can't get it cut out or I probably would not have much lung left!!!!

I will however seek a second opinion like you said...always! I am so glad to hear your great news Kenny!!! You go kick cancer ARSE!!! :-)

Jennie

idlehunters

Annabelle41415 said:

Scans
Sorry they found something new but liking the option of just waiting for now and keeping the treatment that you are on. Sounds like a good plan to just watch and then react, if need be. Wow you have a busy year coming up and so glad your spirit is great.

Kim

Hi Kim!!
Yep.... I have a lot going on this year. How are you doing?

Jennie

idlehunters

pepebcn said:

Hi jennie my dear , i agree with craig that option 2 sounds
great,on the meantime try to forget about this and concentrate in all your future plans!.
I will be praying for you hoping is just benign spots!
Hugs my dear friend!

Thanks everybody!
I love this support group! Marie, my next scan is in 6 weeks...unless CEA rises past 10 the next time it is checked, which is in 3 weeks..... If and when that happens they will scan again and most probably biopsy. Fingers, legs...EYES...everything crossed...LOL

Jennie

Kathleen808

Jennie
Jennie,
You go girl!!! You do have so much to do and cancer will stay the h*ll away! I love that you have a wedding to look forward to. And so much to do this summer too. Fabulous!

Aloha,
Kathleen

dmj101

I am sorry I ignored this post because I was afraid...
Afraid it would make me doubt my decision..
I am not the type to wait on anything..
If they offer you something or me.. I take it.
I know that may be naive..but I need to grasp on to that hope..
you are right chemo is ugly and Folfox is hard the effects of the Oxy part are terible and I am still suffering and it ended in November.. there are alternatives.. I am now on Folfiri..
I have never had a clear number of the mets I have in my lungs .. the report reads numerous once and several in another location.. I think I am afraid to ask... they biopsied one and it was colon primary and that was all I really needed to know. silly I guess but that was it.

pete43lost_at_sea

you arr a cool cucumber
Jen
This is kind of good news, especially the Tcm.
Option 2 and pursuing healing alternatives before chemo.
Maybe a jog, some juice, a little meditation not medication might
Get you so healthy the cancer just disappears. They say that's optimistic thinking, wekk
I believe in the power of positive actions.

Hugs,
Pete

Ps love your attitude, great calm spirit in your approach