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This topic contains 27 replies, has 12 voices, and was last updated by catdander forum moderator catdander forum moderator 1 month, 1 week ago.

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February 9, 2016 at 4:43 pm  #1272926    
catdander forum moderator
catdander forum moderator

Hello to all the new Grace members! I’m Janine and I am one of the moderators here along with Jim. I hope to start seeing your questions and thoughts.

Be sure to sign up to receive our weekly email that brings all of our new content right to your inbox. You can sign up here for our weekly GRACENotes Digest.
Glad to have you with us!


My husband, 8/09 53 @ dx stage III squam nsclc R. pancoast tumor
Destruction of 3 ribs, touching brachial plexus.
6/09-8/09 2 core and 1 VATS undx biopsies. Open thoracotomy for 1 positive biopsy (unresectable)
9/09 Chemo/rads curative intent
11/09 MRI by pancoast specialist surgeon spine met found undiagnosed Rad to spine, Chemo continued thru 6 cycles
Tarceva maintenance 2/10
11/10 3cm tumor L lung, undx core bx w/collapsed lung. Gemzar, 12/10 through 7/12
NED 3/12, stop tx 7/12. Remains NED as of 9/16
Unanswerable question. Was it ever metastatic?

  • This topic was modified 1 year, 2 months ago by Denise Brock Denise Brock.
  • This topic was modified 1 year, 2 months ago by Denise Brock Denise Brock.
July 13, 2016 at 4:53 pm  #1274651    

shelly7

Hello I am happy to be here. I have NSCLC DX 12/12. Had a right upper lobectomy. Had two rounds cisplatin/alimta then had blood clot in port. was fine until 2014 when mets to spine was found. Had radiation to spine. Then on Tarceva until this month. Now it has stopped working and I have numerous new masses in right pleural area with a small effusion. Will start Alimta chemo Monday. Any input will be helpful. I am 59 and never smoked. Thank you Shelly

July 20, 2016 at 4:43 am  #1274727    
Marsh
Marsh

Hello all. I m Marsh. this is my first post for my intro. I’m actually looking for mesothelioma patient, and know more abt it. thanks

August 3, 2016 at 7:37 am  #1287568    

kenuck1

I’m not sure how to tackle this but anyway name here is Ken, 71 yy and live in Ontario Canada ,I was diagnosed about 10 weeks ago as having lung cancer, had 3 x3 Chemo’s so far, Oncologist was quite pleased with my progress after the ‘hand” inspection he made 2 weeks ago, I have read quite a bit about some treatment that is done in Cuba, Canada is evidently taking part in these treatments and I was wondering if anyone had any input regarding them

August 3, 2016 at 2:24 pm  #1287577    

krichellegroth

I’m new to CancerGRACE as well and I’m checking out the forums.

August 5, 2016 at 9:22 am  #1287670    

jwelford

Hi, i’m new to CancerGrace. My name is Joleen and we are waiting for my mom to have a pet scan, MRI and bronchoscopy/biopsy next week. They found a “fist sized mass” in her lung last week, along with a pleural effusion which did not show any malignancy. Very nervous for the test results, and waiting for her to have a PEG tube placed as the tumor is not allowing her to keep food down. I’m 34 weeks pregnant and truly hoping she will get to meet her grandchild. I’ve read the lung cancer statistics and am having a hard time staying optimistic. Any experiences, advice, etc would be greatly appreciated!

  • This reply was modified 8 months, 4 weeks ago by  jwelford.
  • This reply was modified 8 months, 4 weeks ago by  jwelford.
September 21, 2016 at 4:38 pm  #1288697    
jimb14830
jimb14830

Hi everyone. I’m new to Grace, have stage 4 lung cancer with metatisis to the brain and abdomen. I am presently getting radiation therapy to the brain. I imagine I will be asking a lot of questions and seeking advice in the near future. All response will be greatly appreciated. May God bless you all. Jim


The Lord Jesus’ Will

September 23, 2016 at 7:33 pm  #1288729    
catdander forum moderator
catdander forum moderator

Hi jimb, welcome to Grace. I’m so sorry to meet you under these circumstances. We will be here to answer questions as you have them. We also have a great library of informative discussions for patients and loved ones as well. Don’t hesitate to ask.

Best of luck,
Janine


My husband, 8/09 53 @ dx stage III squam nsclc R. pancoast tumor
Destruction of 3 ribs, touching brachial plexus.
6/09-8/09 2 core and 1 VATS undx biopsies. Open thoracotomy for 1 positive biopsy (unresectable)
9/09 Chemo/rads curative intent
11/09 MRI by pancoast specialist surgeon spine met found undiagnosed Rad to spine, Chemo continued thru 6 cycles
Tarceva maintenance 2/10
11/10 3cm tumor L lung, undx core bx w/collapsed lung. Gemzar, 12/10 through 7/12
NED 3/12, stop tx 7/12. Remains NED as of 9/16
Unanswerable question. Was it ever metastatic?

September 29, 2016 at 3:16 am  #1288787    
jimb14830
jimb14830

Thank you Janine. I will having a bronchoscopy done tomorrow 9/30/2016, to get a biopsy. Hopefully, I will then know exactly which critter I’m dealing with. Finished with full brain radiation treatments yesterday 9/28/2016. Right now I don’t have cancer, cancer has me. I hope to turn that around soon, with Jesus, all the support I’m receiving, medical tx.s, and help from GRACE. Thanks to you again!


The Lord Jesus’ Will

October 14, 2016 at 11:10 pm  #1288922    
tripletmom
tripletmom

Thank you SO much for this site! I found great info on this site when I was originally diagnosed with NSCLC in 2014. After my lobectomy in Feb. 2015, staged 1B, I assumed I would be cancer-free forever. Unfortunately, this week a CT revealed that the cancer has returned in both lungs and I am eager to gather as much information as I can to give myself the best outcome possible.

October 26, 2016 at 2:07 pm  #1289000    
catdander forum moderator
catdander forum moderator

tripletmom, Hi! I just saw your post. I can’t say how sorry I am to know you’ve progressed after such hopeful treatment. With an EGFR mutation you can do very well for a very long time. Have those 3 kiddos help out. Although teens are still so so young I’m sure they want to be there for you as much as possible. Don’t underestimate their resolve or need to help. And let us know how we can help.

All the best of hopes for you and yours.
Janine


My husband, 8/09 53 @ dx stage III squam nsclc R. pancoast tumor
Destruction of 3 ribs, touching brachial plexus.
6/09-8/09 2 core and 1 VATS undx biopsies. Open thoracotomy for 1 positive biopsy (unresectable)
9/09 Chemo/rads curative intent
11/09 MRI by pancoast specialist surgeon spine met found undiagnosed Rad to spine, Chemo continued thru 6 cycles
Tarceva maintenance 2/10
11/10 3cm tumor L lung, undx core bx w/collapsed lung. Gemzar, 12/10 through 7/12
NED 3/12, stop tx 7/12. Remains NED as of 9/16
Unanswerable question. Was it ever metastatic?

October 26, 2016 at 5:08 pm  #1289001    
tripletmom
tripletmom

Thank you so much for the reply and words of encouragement, Janine! In addition to the moral support, this site has already provided me with invaluable answers to some questions I’ve had regarding first line treatments (e.g., Afatinib v. Tarceva, Immunotherapy v. oral targeted therapy for EGFR mutations).

Thank you again!

November 22, 2016 at 4:13 am  #1289238    
tanyadean
tanyadean

Hello all, I am Tanya Dean, I am new to this forum. Glad to meet similar community.

November 22, 2016 at 5:47 pm  #1289243    
catdander forum moderator
catdander forum moderator

Hi Tanya, Welcome to Grace. We’re happy to have you and we’re here to help in any way we can.
Janine


My husband, 8/09 53 @ dx stage III squam nsclc R. pancoast tumor
Destruction of 3 ribs, touching brachial plexus.
6/09-8/09 2 core and 1 VATS undx biopsies. Open thoracotomy for 1 positive biopsy (unresectable)
9/09 Chemo/rads curative intent
11/09 MRI by pancoast specialist surgeon spine met found undiagnosed Rad to spine, Chemo continued thru 6 cycles
Tarceva maintenance 2/10
11/10 3cm tumor L lung, undx core bx w/collapsed lung. Gemzar, 12/10 through 7/12
NED 3/12, stop tx 7/12. Remains NED as of 9/16
Unanswerable question. Was it ever metastatic?

November 30, 2016 at 12:59 pm  #1289301    

nance

Hi, My name is Nance. i was 5yrs post squamous cell or lower r lobe remove, than 5 mos chemo cicplat and gemzar…life was good- then had critical drop in sodium level (110) ended up in hosp where they discovered a new primary small tumor in myL l upper lobe they say it is causing the sodium problem. more studies being done to find out the exact dx, other than malignant, also lot of nodes floating aroung my right lung, they are telling me this is a “new” primary not associated with my prior squamous. and not squamous this time. i am joining your group, so when i get details,i can find out more. thanks for letting me be part of this, i will be contacting your group with more information, and am still in shock, i had been feeling so good about beating lung cancer. (faces of lung cancer referred me to you folks. thanks so much
ee

9


Nance

November 30, 2016 at 3:35 pm  #1289304    
catdander forum moderator
catdander forum moderator

Nance,

Welcome to Grace. This isn’t the place you want to need but it is an excellent place for when you do. I’m so sorry you’re doing through this again. It’s true that squamous isn’t a type of cancer that is likely to return after more that a month or 2 so it makes perfect sense that your doctors presume it to be a new cancer. Let us know when you find out more. Let us know how we can help or if you just need to vent. You’re not alone.

Janine


My husband, 8/09 53 @ dx stage III squam nsclc R. pancoast tumor
Destruction of 3 ribs, touching brachial plexus.
6/09-8/09 2 core and 1 VATS undx biopsies. Open thoracotomy for 1 positive biopsy (unresectable)
9/09 Chemo/rads curative intent
11/09 MRI by pancoast specialist surgeon spine met found undiagnosed Rad to spine, Chemo continued thru 6 cycles
Tarceva maintenance 2/10
11/10 3cm tumor L lung, undx core bx w/collapsed lung. Gemzar, 12/10 through 7/12
NED 3/12, stop tx 7/12. Remains NED as of 9/16
Unanswerable question. Was it ever metastatic?

December 6, 2016 at 11:23 am  #1289357    

nance

yep, got new path report- siadh due to a small cell undifferentiated type. not pretty at all. oncologist is gung ho to start chemo- with the SIADH caused by the small cell tumor, from what i have read, my prognosis is pretty grim. i feel like i have no choice though. if the SIADH won’t get better until the tumor shrinks, it’s a catch 22 for me. i have to try to shrink the tumor. funny thing is i swore i would never do chemo for small cell, due to the low survivial rate. god has played a little joke on me. gotta give it 200% to try. i have a great support group, and some fine docs, but can use all the info, and facts you folks can offer. I am a realist is what I consider is a realistic attitude. not real stupid. BUT if my docs are giving me 150%, then I need to give it even more. thanks for any info you can provide. Many t


Nance

December 7, 2016 at 5:58 am  #1289377    

rich4life

Hello, new to the forums and would like to find a user here, can we message between users?

December 7, 2016 at 6:53 am  #1289379    

nance

i don’t have that answer, but i am willing to discuss others and my own diagnosis to learn more about it.
would love to get more information.


Nance

December 7, 2016 at 10:08 am  #1289383    
catdander forum moderator
catdander forum moderator

Hi rich4life,

I’m sorry but we don’t have private messaging. That one flaw of the system we use that is literally the #1 priority fix for our new site (TBA). If you would like to email me or our manager Denise with the info on the member you’d like to contact we can sent an email to that person with your email addi. It’s a long workaround but it works.


My husband, 8/09 53 @ dx stage III squam nsclc R. pancoast tumor
Destruction of 3 ribs, touching brachial plexus.
6/09-8/09 2 core and 1 VATS undx biopsies. Open thoracotomy for 1 positive biopsy (unresectable)
9/09 Chemo/rads curative intent
11/09 MRI by pancoast specialist surgeon spine met found undiagnosed Rad to spine, Chemo continued thru 6 cycles
Tarceva maintenance 2/10
11/10 3cm tumor L lung, undx core bx w/collapsed lung. Gemzar, 12/10 through 7/12
NED 3/12, stop tx 7/12. Remains NED as of 9/16
Unanswerable question. Was it ever metastatic?

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