Community Updates

This topic contains 257 replies, has 34 voices, and was last updated by Dr West Dr West 3 years, 8 months ago.

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July 8, 2012 at 8:26 pm  #1244232    
catdander forum moderator
catdander forum moderator

A few days ago CS made a good suggestion. We were talking about the new “update forum” and while we hope that people will be encouraged to create their own update thread CS suggested some of us might be less inclined to post if they had to create a thread. She’s right and I want to be the first of those.

D has a scan tomorrow and follow up with the his oncologist on Wednesday. Most of you know what I’m hoping for; a good scan (who isn’t?) and then his first chemo break in almost 3 years. It’s not easy to think about much less write. I guess I’m at least a little superstitious. :-|

Janine

P.S. Be patient with me as I learn how to work the new system. :wink:

July 8, 2012 at 8:32 pm  #1244234    

notinamillion

Janine – good wishes to you and D! and hopes for the good scan and then chemo break.

(this is Denise (dbrock) posting in my regular user account, like you I am feeling my way around the new organization). And thank you for your patience in learning what we are doing.
Denise

July 9, 2012 at 6:43 pm  #1244794    
Dr West
Dr West

I just wanted to wish you good luck on your husbands scans. And I think the idea of a community update thread is a good one.

-Dr. West

July 9, 2012 at 7:55 pm  #1244807    

Jazz

Janine,

Best wishes and mountains of luck on D’s scan. A treatment break would be tremendous – I hope you both can have one! Being NED for months is wonderful, but I hope you can really enjoy it with a break!

Fingers crossed,

Jazz


Non-smoker, Dx 6/06 Stage IV Adeno. EGFR+ (exon 19 del), T790m+. Trial: 2cyc Carbo/Doce/Avastin + 2 w/Gem 8 – 12/06; Avastin maint. 1 – 4/07. Alimta + Tarceva 5/07 – 2/09. NED to 8/09. Tarceva 150 9/09-5/11, SBRT/XRS to lung & spine met 2/11. Trial MK2206 (AKT inhibitor) + Tarceva 5 – 12/11. Afatinib+cetuximab trial 2/12 -2/13. LL collapsed. 1/13 PET – new bone & adrenal mets. 4 cyc Carbo-Gem-Tarceva 5/13. Brain MRI 10/13 – clear. Lost Dad to LC 5/13.Anti-PDL1@Angeles Clinic?

July 9, 2012 at 9:05 pm  #1244814    
GRACE Webmaster
GRACE Webmaster

Sending positive vibes in your direction Janine & D!

-Mark

July 9, 2012 at 9:56 pm  #1244821    

onlychild76

Hi, I hope everyone remembers me! I can’t figure out how to update my original question “Etoposide Only for SCLC” from 14 days ago, so I’m posting here. (I will read the updated instructions, so I will know for next time.) I wanted to keep it in the same thread so that it will help anyone who is searching. But nevertheless, I appreciate reading updates, so here the one on my mom:

7/9/12 UPDATE: Wanted to let everyone know that nothing new was found on mom’s CT scan. So now she has 1 more round of VP 16 only and we will check on her kidneys via the nephrologist. I will post another update soon after the last round and the follow up scan. Mom also had a blood transfusion because her blood counts were very low. That made her feel a little better. She was finally able to get some real sleep after the blood transfusion. First real sleep in months. Thanks everyone for the previous replies and to Dr. West for the reply as well.


Mom 67 Yrs: 2010- Uterine Cancer dx, Hysterectomy, MMMT, Monitoring; 2012-Lung Cancer (non-smoker), Right Thorachotomy, Mixed Histology (SCLC within NSCLC), Prescribed 4 rounds of Cisplatin/Etoposide. Removed from Cisplatin after 1 full treatment and 1 day due to Kidney (Bun and Creatinine) numbers being too high. Moved to Etoposide only. Scheduled for CT scan on 6/27.

July 9, 2012 at 10:21 pm  #1244826    
GRACE Webmaster
GRACE Webmaster

onlychild76,

If you want to recreate a thread in the new forums, I’d be happy to link the old forum to the new one, so you can continue the conversation – just send me a request in the Support forum after the new topic is posted in the appropriate new forum. :)

Cheers,

-Mark

July 10, 2012 at 10:18 am  #1244858    

double trouble

Janine, I’m still following along. Best of luck to your husband. He deserves a break.
Debra

July 10, 2012 at 11:30 am  #1244863    
catdander forum moderator
catdander forum moderator

Thanks everyone. I’m keeping my heart in my throat. I suppose my body thinks it’s safer there but I’m not sure.

Debra, I hope I hear from you as you go through your process. When do you go to Moffitt? Again, heart in throat.

Much love,
Janine

July 10, 2012 at 12:12 pm  #1244870    

marisa93

Janine, sending best wishes for a good scan and a chemo break for your husband. Lots of wishes your way as well since you need the good results and break also! :)

Debra, keeping you in my thoughts always and sending best wishes your way:)

Lisa


Nov 23, 2010 husband(49/smoker) dx IV NSLC mets to brain/liver, Nov-Dec, 2010 15 WBR tx, Jan’11 MRI much improved, Dec ’10-Mar’11 4 txs carbo/alimta/avastin w/good response, Apr ’11 MRI mets almost gone, Apr ’11 start maintenance alimta, Jul ’11 MRI still good, Jul ’11 carbo/taxol for new lung met and 2 liver mets, Oct ’11 MRI new brain mets and major progression in liver, Nov 2, ’11 GK, Nov 19, 2011 at peace
Since then: http://cancergrace.org/forums/index.php?topic=11426.0

July 10, 2012 at 1:24 pm  #1244886    

double trouble

Thanks so very much. I have a very good lung cancer advocate on board now and should have more information and or opinions soon. I will post my news as soon as I have it. I’m not jumping into anything. Lisa, so good to hear from you, and please give Jim a huge hug for me.
Debra

July 10, 2012 at 7:36 pm  #1244893    

laya d.

Good Luck Janine!!! I hope D’s scans are NED NED NED!

And, Miss Debra – – Good luck. I’m waiting anxiously to hear what the docs have to say. . .

AND HI LISA AND JIM. . . .SOOOOOOOO HAPPY YOU GUYS ARE HERE. . .

Much Love,
Laya


1/10 – My Mom (58) dx w/ NSCLC-Adeno 3a; 1 cycle of neoadjuvent Carbo/Alimta before finding out EGFR+ (Ex. 19), then switched to 7 wks of neoadjuvent Tarceva/150 mg (major shrinkage); 4/10 – right pneumonectomy; 6/10 started 3 rounds of adjuvent Cis/Alimta w/ concurrent chest radiation (7 wks); 8/10 – NED; 11/10 – small nodule in left lung; 1/11 – 3 small nodules in left lung, start Tarceva/100 mg; 4/11 – suspected sclerotic met to hip, continue w/ Tarceva, add XGEVA, brain MRI clear; 9/11 – solitary 3 cm met (adeno w/ T790m mutation) to cerebellum, surgery and gamma knife, up Tarceva to 150 mg; 11/11 – 2 left lung nodules growing, biopsy on 1 shows mutation from adeno to squamous (shocker!), brain MRI clear, continue Tarceva & Xgeva; 2/12 – brain MRI clear, CT scan, remaining nodule slightly bigger – – monitor for now, Tarceva (reduced to 100 mg) & Xgeva continued; 4/12 progression and rebiopsy (confirmed adeno), stop Tarceva, switch to Carbo/Alimta; 6/12 maintenanceAlimta; 8/12 back to Tarceva; 10/12 Gemzar; 11/16 difficulty breathing; 12/12 hospice initiated…my Mom passed away peacefully on 12/19/12. Heartbroken.

July 10, 2012 at 9:50 pm  #1244897    

double trouble

Well, they had a full house at tumor board today, and there were mixed opinions about what to do with my case. The surgery idea is on a back burner pending new PFT’s and a repeat EBUS. and they’re talking chemo again. I was reminded that I am a high risk patient. Works for me. I was not convinced that having a surgery that would leave me an invalid was in my best interest. I’m hoping they can get enough tissue during the EBUS to revisit molecular testing, since last time it was insufficient. My Kras status is based on slides from my left lung. So I would like to know more about the process going on on the right.

In the meantime the Lung Cancer Care Coordinator at another major local facility, who is quite the advocate, is going over my records and has talked about discussing my case with a few of her colleagues in various areas of the country and she gave me the name of a dedicated thoracic surgeon here in Jacksonville who she felt would give a good second opinion.So, I may not have to leave town to get good advice.

I’m finding myself paralyzed with fear and unable to function one minute, and madly getting together paperwork and forms and making phone calls the next. I should be used to this by now, but they keep building bigger and better roller coasters! What a ride!
Debra

July 11, 2012 at 8:10 am  #1244921    
JimC Forum Moderator
JimC Forum Moderator

Janine,

Sending good thoughts your way today for great results!

Debra,

I’m sorry to hear about the uncertainty as to your next treatments, but I’m glad that you have access to some good people. You’ll be in my thoughts as well. And thanks for the hug…I could actually feel that one! ;)

Hi Laya!!!

JimC
Forum Moderator


Jul 2008 Wife Liz (51/never smoker) Dx Stage IV NSCLC EGFR exon 19
4 cycles Carbo/alimta, 65% shrinkage
Tarceva maintenance
Mar 2010 progression, added Alimta, stable
Sep 2010 multiple brain mets, WBR
Oct 2010 large pericardial effusion, tamponade
Jan 2011 progression, start abraxane
Jun 2011-New liver, brain mets, add Tarceva
Oct 2011-Dx Leptomeningeal carcinomatosis; pulsed Tarceva
At rest Nov 4 2011
Since then: http://cancergrace.org/blog/jim-and-lisa

July 11, 2012 at 6:35 pm  #1244934    

laya d.

Miss Debra:

Just wanted to send you a BIG giant hug. I wish I could just pop in and take you out for some head-clearing and some cake! I’m so sorry you’re going through these uncertain times. . .Just take deep breaths. . .deep deep breaths. . .

Laya


1/10 – My Mom (58) dx w/ NSCLC-Adeno 3a; 1 cycle of neoadjuvent Carbo/Alimta before finding out EGFR+ (Ex. 19), then switched to 7 wks of neoadjuvent Tarceva/150 mg (major shrinkage); 4/10 – right pneumonectomy; 6/10 started 3 rounds of adjuvent Cis/Alimta w/ concurrent chest radiation (7 wks); 8/10 – NED; 11/10 – small nodule in left lung; 1/11 – 3 small nodules in left lung, start Tarceva/100 mg; 4/11 – suspected sclerotic met to hip, continue w/ Tarceva, add XGEVA, brain MRI clear; 9/11 – solitary 3 cm met (adeno w/ T790m mutation) to cerebellum, surgery and gamma knife, up Tarceva to 150 mg; 11/11 – 2 left lung nodules growing, biopsy on 1 shows mutation from adeno to squamous (shocker!), brain MRI clear, continue Tarceva & Xgeva; 2/12 – brain MRI clear, CT scan, remaining nodule slightly bigger – – monitor for now, Tarceva (reduced to 100 mg) & Xgeva continued; 4/12 progression and rebiopsy (confirmed adeno), stop Tarceva, switch to Carbo/Alimta; 6/12 maintenanceAlimta; 8/12 back to Tarceva; 10/12 Gemzar; 11/16 difficulty breathing; 12/12 hospice initiated…my Mom passed away peacefully on 12/19/12. Heartbroken.

July 11, 2012 at 8:43 pm  #1244947    
catdander forum moderator
catdander forum moderator

D is officially on a 3 month break. Of course this is contingent upon his having no issues arise, which is a tall order. The plan is that his next appointment is at the end of October. It’s almost too much to hope for but I’ve started to make some plans for adventure (Albeit marry go round sized not roller coaster sized).

It has been a good evening in Birmingham.
Janine

July 11, 2012 at 8:47 pm  #1244948    
GRACE Webmaster
GRACE Webmaster

Great news Janine!

July 11, 2012 at 8:52 pm  #1244949    
catdander forum moderator
catdander forum moderator

Lisa, it’s so good to hear from you and I’m so happy you and Jim will be around.

And OnlyChild, I’ve ignored you. Please accept my apologies. It’s great that your mom is stable. I know she must be just about wiped out from all the cisplatin. But with one more treatment I’m sure she can just about see the light at the end of the tunnel. Keep us posted and all the best to you and her.

Janine

July 11, 2012 at 9:02 pm  #1244953    
catdander forum moderator
catdander forum moderator

Debra, sweet sweet Debra, why must you go through all this stuff. I am very glad you’re finding what and who you need there in Jacksonville. It’s quite a burden lifted I’m sure.

That last pp sounds about par for the course I’m sure (not your course but people going through similar situations). Like Laya said, take a breath, take 3. and a couple of yoga postures.

Much love

July 12, 2012 at 1:02 am  #1244970    

slimer

Hi Catdancer,

I assume from your post that D continues NED? I have been waiting for your post and rooting for D as my inspiration to hope for Gemzar (gemcitabine) to get me to NED, or as close as possible. A lot to hope for from a first line single agent chemo against extensive Stage IV NSCLC which only has a 10% response rate and median 3.9 months to progression according to clinical trials. D is definitely in the “one percent”, and I hope his break goes on and on and on and his scans further and further apart.

I received my 3rd round CT results on Monday July 2 and the result was “Stable”. Although my onc and my wife were ecstatic, I was disappointed, hoping for continued shrinkage. I mean “stable” is good, but I feel at this point “stable” means Gemzar and I are entering a “maintenance” mode at best.

I would like to ask you if on D’s extraordinary long journey with Gemzar if he ever had a scan that was just “stable”, or did each and every scan along the way show a response? I suppose you can guess why I am asking – does my next scan have the chance to show a response or am I approaching the shift to more punishing chemos? Apart from whacking my white cells and platelets, which come back sufficiently each week for another infusion, Gemzar for me during the 9 months and 27 infusions I have completed has been almost like not having chemo at all, so I fear leaving Gemzar for other chemos almost as much as progression itself.

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