Community Updates - 1244232

catdander
Posts:

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:

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Reply # - July 8, 2012, 08:32 PM

deniseabrock
Posts: 3

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

Reply # - July 9, 2012, 06:43 PM

Dr West
Posts: 4735

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

Reply # - July 9, 2012, 07:55 PM

Jazz
Posts: 279

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

Reply # - July 9, 2012, 09:56 PM

onlychild76
Posts: 1

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.

Reply # - July 9, 2012, 10:21 PM

primarymark
Posts: 61

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

Reply # - July 10, 2012, 10:18 AM

double trouble
Posts: 573

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

Reply # - July 10, 2012, 11:30 AM

catdander
Posts:

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

Reply # - July 10, 2012, 12:12 PM

marisa93
Posts: 215

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

Reply # - July 10, 2012, 01:24 PM

double trouble
Posts: 573

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

Reply # - July 10, 2012, 07:36 PM

laya d.
Posts: 714

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

Reply # - July 10, 2012, 09:50 PM

double trouble
Posts: 573

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

Reply # - July 11, 2012, 08:10 AM

JimC
Posts: 2753

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

Reply # - July 11, 2012, 06:35 PM

laya d.
Posts: 714

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

Reply # - July 11, 2012, 08:43 PM

catdander
Posts:

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

Reply # - July 11, 2012, 08:52 PM

catdander
Posts:

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

Reply # - July 11, 2012, 09:02 PM

catdander
Posts:

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

Reply # - July 12, 2012, 01:02 AM

slimer
Posts: 43

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.

Reply # - July 12, 2012, 09:13 AM

catdander
Posts:

Hi Slimer, I read your bio to refresh myself. BTW, please copy it and paste it in your "signature". You can find the signature option in your "forum profile". Just click your user name on the left of any of your posts (where a pic would go) that takes you to your forum profile and sig option. The signature is the one that shows on the bottom of your posts.

Congratulations on such a great response to Gemzer. We're really lucky, you and D to be on the right side of the curve. D is still NED. He did have a scan that showed stable and one that showed possible progression early on (enough so that the onc speculated about a change). These are some of the reasons the onc is questioning whether it's even cancer or not (it's not the primary and the biopsy on the new lesion only provided a 3 day stay in the hospital with a collapsed lung, non diagnostic). I'm pretty sure his first and second thought is that it is cancer and spent some time yesterday describing ways in which it could return and what to watch for.

The take home is that anything is possible...and at least for now we're very lucky.

BTW, I think you do have options that aren't more toxic than gemzar. If I read your bio right you have adeno with squam features. That makes you very possibly a candidate for alimta and for sure tarceva. If you are in an area near enough to a trial there are many and some at least are very promising.
http://cancergrace.org/lung/2012/06/16/immunorx-in-lc-pt-2-brahmer/
http://cancergrace.org/lung/2012/06/13/immunotherapy-for-lung-cancer-pa…

You're in a good place, congrats
Janine

Reply # - July 12, 2012, 10:31 AM

marisa93
Posts: 215

Janine, wonderful news for D and you...now, go enjoy!

Debra, so sorry you are on such a roller-coaster. Sending ((((hugs)))) to you. I was only too happy to give one to Jim for you. We are thinking of you:)

Laya, we are both happy to be back here(have always lurked a bit). I find it a little tough sometimes but it's so nice to communicate with everyone again:)

Onlychild, I also want to apologize for forgetting you. Thinking of you and your mom:)

Slimer, congrats to you on such good response.

Lisa

Reply # - July 12, 2012, 11:15 AM

slimer
Posts: 43

Catdancer,

Thank you for your generous response and the links. With all my concentration on the "Stable" CT result in my lungs, I forgot to mention that the tumor on my left rectus muscle inquinal area that measured 3 cm on my Dx PT/CT back in Aug. 2011 was not seen on the July 2 scan, so now no met outside lung, and that definitely is a positive.

Big cyber hugs to you and D. I have put October on my calendar/diary and await more good news from you guys.

Slimer

Reply # - July 12, 2012, 05:46 PM

Dr West
Posts: 4735

It's great to hear from everyone, and I apologize for being less frequently around the forums (though not absent). I'm trying to let other docs field some questions without me butting in as much, as I don't want to inhibit others by jumping into every conversation.

Just about all of these results sound very encouraging for people. I'd say that I share the perspective, and I think most experienced oncologists do, that stable is GOOD. Non-progression is perfectly welcome. You almost always see the benefit of a treatment "front-loaded", so that the shrinkage tends to become less pronounced over time, and it's quite unusual to see further shrinkage in lung cancer after the first 1-2 scans. So if we see initial shrinkage and then stability, we're usually very happy with that, because the most important thing at that time is prolonged duration of non-progression.

Debra, I wish I had a good answer to offer, but I'm glad you have so many people thinking carefully about the best approach for you. I'll just join to chorus of fans here who are wishing the best for you.

-Dr. West

Reply # - July 13, 2012, 05:20 PM

Jazz
Posts: 279

Hurray for long treatment breaks! Janine, may NED follow D. all the year through (it's like Xmas in July!).

So good to see you here again, Jim and Lisa ;)

Slimer, best wishes for continued success with Gemzar. It's good to defy time limits given on one's life...

Onlychild, hope your Mom continues to do well.

Jazz

Reply # - July 14, 2012, 09:58 AM

fortmyr
Posts: 128

Janine, this is great news. NED is always a welcome guest :wink:

Jim and Lisa, it's great to see you back (and I love the picture).

Debra, I'm thinking of you and keeping my fingers crossed.

Laya, how is your mom doing?

I'm glad I found this thread...Take care everyone,

Myriam

Reply # - July 14, 2012, 10:09 AM

marisa93
Posts: 215

Jazz, thank you, it's good to be here again :)

Myriam, it is great to be back and glad you like the picture:) Happy that you found this thread also!

Keeping everyone in my thoughts,
Lisa

Reply # - July 16, 2012, 03:16 PM

laya d.
Posts: 714

Hi All:

So happy to read that D is geting a well deserved treatment break. . .and continued luck to the rest of you.

Myriam: My Mom is getting a CT scan as we speak. . .but we don't get the results until our appt. with her dr. on Wed. afternoon. I will come by and update you guys after that. . .generally speaking, she is extremely fatigued - - although her dizziness, nausea and balance problms have pretty much resolved.

Much love to you all.. .

Laya

Reply # - July 16, 2012, 04:16 PM

JimC
Posts: 2753

Laya,

Sending my positive vibes for a great scan result, and I will be thinking of you and your Mom until you check in again.

Jim

Reply # - July 16, 2012, 06:58 PM

Dr West
Posts: 4735

Laya,

I'm glad some things that were making her miserable have improved, even if her fatigue remains an issue.

Good luck with her upcoming scan. We're thinking of you.

-Dr. West

Reply # - July 17, 2012, 09:34 AM

double trouble
Posts: 573

I will be holding my breath for the results of the CT. It's good to hear the balance issues have resolved. You both continue to hold a special place in my heart.
Debra

Reply # - July 17, 2012, 09:37 AM

double trouble
Posts: 573

Janine, I'm hoping that D's new area of concern turns out to be nothing. BTW, I think you're doing an amazing job as a forum moderator. You're awesome!
Debra

Reply # - July 17, 2012, 08:30 PM

catdander
Posts:

Debra, you made me second guess my reality for a moment there. But D is in a good place. Scan results say NED. So couldn't be better and we're hoping for a long break. Unless you're talking about my head and it is always full of areas of concern. Hell, it's an area of concern in itself.
Thanks so for the vote of confidence in the moderating area. I have to admit I feel a little lost because so many of our wonderful regulars aren't responding like they used to. Y'all need to come back. Jim and I won't bite if you provide insight and knowledge, promise.
Janine

Reply # - July 23, 2012, 05:37 AM

follansbee
Posts: 44

Update on my husband's latest CT scan: no progression, modest amount of shrinkage! Bloodwork , etc. remain good. Will continue Avastin/Alimta maintenance, next scan in three months.

follansbee :-D

Reply # - July 23, 2012, 12:38 PM

catdander
Posts:

Yay Follansbee!!! yay modest shrinkage!!!
So happy to hear good news. Take a breath and enjoy the rest of your summer. (are you in the hemisphere with summer at the moment?)

I'll think of you when I do my dance today. yeehaa!

Reply # - July 23, 2012, 03:28 PM

Dr West
Posts: 4735

That's really wonderful, Follansbee. Congralations, and thanks for sharing that good news.

-Dr. West

Reply # - July 23, 2012, 05:05 PM

follansbee
Posts: 44

Thanks, to all of you. We are really so happy. Another three months of being relaxed and feeling grateful. Yes, catdander, we're in summer here and enjoying the HOT North Carolina weather.

follansbee

Reply # - August 12, 2012, 11:40 AM

certain spring
Posts: 762

I feel that we haven't heard from Jing (faithandhope79) for what seems like a long time. Of course I would wish to respect her privacy but if anyone is in touch with her, I am sure lots of people here would like to hear how she is doing. Or if there is news of her that I have missed, could someone point it out? Best to all.

Reply # - August 15, 2012, 03:05 AM

blue skies
Posts: 69

I am in close touch with Jing. We have both been focusing on our personal circumstances of late. I am sure that she would not want anyone to be unnecessarily worried about her (though her absence is always concerning) and will be happy for me to provide some reassurance about her condition while she is feeling too tired to log on to GRACE.

Jing dropped out of the BIBW/cetuximab trial on July 13...after about 9 months of stable results. I think that makes her one of the super-responders, once again!

Jing has been struggling with debilitating pain from mets to her spine. She's been in pain since early this year, but it had gotten untenable in recent months and she finally decided to speak up about it. Like me, a diagnostic MRI of her spine identified a 1 cm met on her brain. Her doctor was more concerned with the spine met and the pain and suggested that the brain met may be quite indolent and may have been there a long time. They irradiated her spine a week or so ago and will irradiate the brain met later this month. Then she will start a course of Tarceva/Alimta.

You may recall that Jing just passed her 5 year lung cancer milestone. She asked her doctor about prognosis on Tarceva/Alimta and he said it should work for at least a few months, but that he has a patient who was on the combo for 7 years. "So that is some hope," Jing says..

The pain medication is helping, but she has had to take medical leave and stay at home because of residual pain and the fatigue and side effects of the medication. Her doctor has told her that the pain will continue to resolve, that she'll feel better in two weeks and continue to improve over the next several months.

I may have to fight you all to declare myself Jing's biggest fan! We met at MSKCC when we were both enrolled in the BIBW clinical trial and she is just as wonderful in person as she is on line!

Reply # - August 15, 2012, 05:33 AM

certain spring
Posts: 762

So pleased to have news of Jing, Blue Skies - thank you for filling us in. What a lot you have both been through. I am really sorry to hear about her pain, and hope the radiation will help. Wonderful that you had the chance to meet in New York.

Reply # - August 15, 2012, 12:39 PM

catdander
Posts:

Oh Blue Skies, Thank you so much for the update on Jing. She is a superstar! as are YOU!

Reply # - August 15, 2012, 05:27 PM

ssflxl
Posts: 204

Blue Skies,

thanks for your post about Kaiser clinical trials. I know about the trial coordinator and I live in Northern CA, and I don't think they will cover clinical trials in the East Coast - only UCSF, Stanford and UC Davis, so I am more restricted. I know they don't generally cover Phase 1 trials - especially when it's a brand new drug. I am just gathering information at this stage, so that when the time comes, I will already have the info needed about the trials that I want to participate
I am so glad that you are in touch with Jing. we miss her posts and you can let her know that we are pulling for her. I wonder if she has tried Tarceva with Avastin? It does take a while for radiation to help. In my case, it was a nerve compression and it took about 5 weeks after cyberknife before I finally felt good relief.

thanks

ssflxl

Reply # - August 15, 2012, 09:43 PM

blue skies
Posts: 69

ssflxl,

I don't know why Kaiser would care about the geographical location of the clinical trial as long as they felt you were up to being able to handle both the treatment and the travel. And as Jazz and others can tell you, travelling back and forth for even a one-day or overnight visit can be draining. Often, in the beginning, you must travel each week, later spreading the viosits out to twice a month or maybe more. And then, all the testing and monitoring has to be done at that institution, so you have to add in days for CT scans and such. But, if you are otherwise healthy, it can work and it becomes part of your routine lifestyle. I grew to enjoy my quiet rides between DC and NYC, Kindle in hand. And now I miss it!

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