Holding Your Nerve

This topic contains 118 replies, has 24 voices, and was last updated by  laya d. 4 years, 4 months ago.

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May 28, 2013 at 12:20 pm  #1256817    
catdander forum moderator
catdander forum moderator

Certain spring my friend, like Debra I didn’t want to open this thread. I worried yesterday that I was waiting for the other shoe to drop. My instinct is to turn my attention to the planning stage but I very much get your wish for this not to turn into a what’s next discussion. So let me say hurrah for pain meds and steroids don’t be bashful about using them.

I’m very glad you have such a loving husband with you, your brothers, and an open and involved medical team. I know they create a huge safety net. I wish I could be there too. But, I’m here through cyberspace and offer all the love and tenderness in the good vibes of my meditations.

love and hugs,
Janine

May 28, 2013 at 1:36 pm  #1256828    

mikem

CS,

I just want to send my hopes that you and your oncs can find something to throw at it. And when you do, throw it really hard. Everyone here at GRACE will be glad to help back that up with some muscle. Take care –mikem

PS. Sorry, I get a little corny now and then.


56 year old former smoker diagnosed w/Stage IV NSCLC Adenocarcinoma 10/20/09 Completed 6 carbo/alimta followed by 10 Alimta maintenance. Biopsy of iliac negative for metastatic disease. Might not have been a stage IV after all. Oct. 2010, on to surgery…. removed lung. All lymph nodes clear 11-17-10. July 2014 Still all clear. One more 6 month check and if all is good annual only.

May 29, 2013 at 7:31 am  #1256837    

Luke

Be brave CS! There appears to be juice you haven’t tried like Alimta (my dad achieved disease control for a good 1+ year with this) and Taxotere (something still in our pocket if the clinical trial doesn’t work out) , and who knows what may become available in the near term.

Please stay strong!


Dad (then 63) dx Stg.IV lung adeno with brain mets in 2011. EGFR / ALK negative. BRAF positive.
First line: Carbo+Gem / WBRT
Maintenance: Alimta
Second line: LGX+MEK clinical trial
Third line (present treatment): Keytruda

May 29, 2013 at 10:18 am  #1256841    
Denise Brock
Denise Brock

Hi CS –
I am sad, but happy to hear your visual voice. You truly are one of my favorites here (there are so many, even though I don’t post much, I do think the absolute world of everyone here). This group has changed my world, and how I think of so many people, of disease, and of bravery. It is the most brave to admit that you are afraid, and this thread has completely touched me in its whole.

There is a thing, I think, like a low level shock. You do what you need to do; you continue on, your brain protects you in a weird way. You take the steps one at a time… deal with the new singular pain, then deal with the next thing. It becomes the job. Opiates and steroids are your friend, most definitely. Don’t ignore the ever faithful anti-anxiety med.

In the Life of Pi – the tiger (Richard Parker) was at bay during the time they are shipwrecked almost on an understanding between him and Pi, living in the lifeboat tolerating each other. Keeping Richard Parker satisfied but somewhat submissive on some level kept him alive. Of course, he had to pee in the boat to establish his alpha status. I guess I like the analogy of the story. I am not suggesting any peeing.

One thing at a time. Chin up. Stay comfortable. Keep talking.
XXOO
Denise

May 29, 2013 at 12:39 pm  #1256842    

aunttootsie001

Stay Strong Lady! Keep this positive Vibes rolling! We are all Praying for the two of You! Hang in there!
Lorrie from Ohio!
I’m sitting in Surgeons office as we speak! Just left ONC. Pleurentisis wasn’t 100% successful, Surgeon is going to want to insert the Cath tube and Bag temp he said and I have decided to go a different route for a little while? Don’t want the Cath just yet! So will try doing a drain first and wait and see how fast it fills up again?

May 30, 2013 at 8:07 am  #1256869    

certain spring

Thank you so much to everyone for your understanding and encouragement. It has been grim – the sheer speed with which the liver symptoms have come on is frightening. I have gone from being functional to not very functional in less than two weeks.
The biopsy was not, alas, the calm experience that Debra described, although it could have been (and it was very useful to hear about it in advance). The pain was awful – unfortunately one of the nurses didn’t give the dose of fentanyl that was requested, so I was in what doctors call “some discomfort” and they had to sedate me. Recovery was riotously noisy, if cheerful, and no one seemed to know what to do with the biopsy, which did nothing for my confidence. Today I trailed off for a speculative assessment at a phase 1 trials unit with an orange tummy and a tremendous wheeze – it seems the liver is pressing on my diaphragm and compressing the lungs. We tried the towels last night (thank you Debra), and a hot water bottle also helped. My husband is being saintly – coming home early and working from home more. When I am not in floods of tears we have a lot of fun.


49-year-old non-smoker, dx stage IV NSCLC May 2010 (squamous tumour of the left lung with multiple brain metastases). Radiotherapy to chest and brain; progressed through two cycles carbo/gemcitabine. Repeated lung collapses; pneumonia in collapsed lung, Nov 2010; bronchial stent placed, Dec 2010. Declined second-line Taxotere. Mutation testing Feb 2011, surprise EGFR exon deletion 19. Started Tarceva (150mg), Feb 2011. Progression in liver and elsewhere, May 2013.

May 30, 2013 at 8:32 am  #1256871    

laya d.

Like some of the others, I opened this, read it, and just left to cry for a bit. I am so very sorry you are going through this, cs. I wish I had the power to do something – – anything – – to make it even a bit better. But all I can offer you is my friendship and love – – and to let you know that I think about you every single day and just wish wellness for you. You are right to say that the despair is the worst part of this. . .I remember how very crippling it was. The way that I personally dealt with it was to concentrate on the issue at the forefront at the time – – which for my Mom was her air-hunger. So, I just concentrated on that and focused on resolving or calming that issue. I tried very hard to push everything else back in that moment. Essentially taking bite-sized pieces of the bigger problem and dealing with it. The big picture is just too overwhelming. Of course, there are some great meds out there to calm the nerves as well. My Mom became a big fan of Ativan. . .

I love you, cs. . .And, I’m keeping you very very very near.

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.

May 30, 2013 at 8:58 am  #1256872    

double trouble

I’m so sorry the procedure was less than I described. I hope they got sufficient tissue for their needs. Pain generating from the liver can be pretty consuming, and what works well, anti-inflammatory medications, are not good for the GI tract in general, and Tylenol in excess is bad. I makes it difficult to control.

I have found that if you can get a super dose of something that stops the inflammatory process in its tracks, that the pain becomes easier to stay on top of. I’m thinking back to my VATS surgery, where opioids were not very effective and I asked for an anti-inflammatory. What I got was a shot of ketorolac, and I got immediate and total relief.

I think when inflammation starts that it seems to be system wide, and causing problems all over the body. I guess it is cytokines or something (I don’t really know much except how I feel). If you can stop that production of inflammatory substance, then you can get ahead of the pain with much less medication.

That’s my uneducated theory anyway.

I am most concerned about your difficulty breathing. That is such a helpless feeling. I hope you are not trying to push yourself too much. Try to rest and relax as much as you can.

I love you too cs, and am thinking of you every day.
Debra

May 30, 2013 at 12:35 pm  #1256875    
Dr West
Dr West

I’m just so sorry, cs. You are incredibly deserving of the adoration of your husband and everyone here who wishes we could do more than care deeply about you and share in your concern.

This is all very humbling, for patients, caregivers, and doctors alike, to be so unable to make things better, though we desperately wish we could.

-Dr. West

May 30, 2013 at 8:09 pm  #1256880    

njliu

CS, we are saddened by the progression, and thankful to your continuing in sharing experience despite going through such a rough patch. You show us how this unfair battle can be fought with great degree of grace, dignity and courage. You are such an exemplary person.
NJ


Wife, 56, Asian, 11/11 Dx Adenocarcinoma 3B, EGFR+. 12/11 Iressa, great response. 12/12 asymptomatic brain mets with possible lepto, 1/13 WBR, continue Iressa, 9/13 Local Progression at primary tumor, 10/13 focal radiation, 1/14 PET Scan:Tumor Resolution, continue Iressa, 6/14 PET shows flare up at same primary. 9/14 CT stable/MRI reappearance of brain mets, 4/15 stable brain mets, 5/15 increase in SUV and slight pleural effusion. 6/15 Afatinib + Cetuximab

May 31, 2013 at 10:14 am  #1256893    

judys

Cs- When you said in your earlier post about knowing this was coming, it really hit home with me. I too know that intellectually but as in my case, as the years go by I wonder how I’ll handle the news. Better than my husband will I know. I think I was better prepared early on after diagnosis to hear bad news…..

Keep helping us all hold our nerve.


Never-smoker; Diagnosed 2/2007 at age 64 with NSCLC adenocarcinoma, Stage 3b. Carboplatin/taxol/avastin: 3/07 – 6/07; radiation 8/07 -9/07; Avastin 10/07 – 12/07; Nodules in prev.clear rt lung; repeated carbo/taxol/avastin 1/08 – 3/08; Tarceva 4/08 – 9/11; radiation to soft tissue mass between two ribs 10/11; Alimta 10/11 – 2/12; treatment break; return to Alimta 5/12 – 6/12. Taxotere 7/12 – 10/12; treatment break 11/12 – 1/13; scan showed progression 1/13; restarted taxotere with zometa 2/13

May 31, 2013 at 10:36 am  #1256895    
catdander forum moderator
catdander forum moderator

Certain spring, I’m sending you all the love and comfort I can. I hope you catch it.
You’re awesome and loved.
Janine

May 31, 2013 at 10:47 am  #1256896    

certain spring

Thanks to all. This has been a bad day, so I very much appreciate what has been said.
Actually I’m wrong. Not such a bad day. An up-and-down day. But better for the kindness and support I find here.


49-year-old non-smoker, dx stage IV NSCLC May 2010 (squamous tumour of the left lung with multiple brain metastases). Radiotherapy to chest and brain; progressed through two cycles carbo/gemcitabine. Repeated lung collapses; pneumonia in collapsed lung, Nov 2010; bronchial stent placed, Dec 2010. Declined second-line Taxotere. Mutation testing Feb 2011, surprise EGFR exon deletion 19. Started Tarceva (150mg), Feb 2011. Progression in liver and elsewhere, May 2013.

May 31, 2013 at 11:42 am  #1256900    
catdander forum moderator
catdander forum moderator

Well that’s because you’re awesome and loved.

May 31, 2013 at 12:41 pm  #1256903    

Jazz

May 28, a day that will go down in infamy. Lung cancer took my father that day, and coupled with Certain Spring’s news, I’ve been bludgeoned. Now that the wind has gone out of my sails, my platelets are at 58, and the pinching pain in my right side has me wishing I’d pirated some of my Dad’s liquid morphine before the hospice nurse got rid of it, all I can hope for is what Certain Spring said years ago, which our friend TS quoted in her last blog post – “This tidal wave comes and crashes over you, yet when it’s gone you find you’re still standing. Can be quite exhilarating. Hope it gives you a sense of your own resilience.”

None of us may be feeling very resilient right now, but in spite of our sorrows I continue to hope we’ll overcome our disease once again, and if not, that at least our husbands and loved ones will circle the wagons and ease our passage to Elysian Fields (just as good if it turns out to be the Old Course at St. Andrews or the champs-élysées ).

Our experiences, all so similar, have created a strong and therapeutic liquor. As we add wisdom to this brew called Grace, so should we gather, drink, and gain strength from it. Sorry to be crying into the pot right now but thank you for the safe haven and the drink.

Endless love and strength to all.

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?

May 31, 2013 at 2:04 pm  #1256905    
catdander forum moderator
catdander forum moderator

Oh Jazz, this is awful news, I’m so very sorry.
I love your metaphors and certain spring’s too.
The Grace brew welcomes your tears and so very glad it is here for us all to add to as well as the wisdom the hope and the pain. I absolutely can’t imagine the tangle of emotions churning around you. I want you to know that I am here in sweet om Alabama sending you comfort.
Call a doctor nearest you and have a prescription or 2 written for some meds. There’s no need to manage this without a bit of help from the chemistry lab.

With my sincerest condolences,
Janine

May 31, 2013 at 2:12 pm  #1256906    

double trouble

I am humbled and honored to be part of this phalanx. Beautifully said Jazz, and I’m so sorry. CS, continued love.
Debra

May 31, 2013 at 3:48 pm  #1256910    

certain spring

Jazz, I’m so sorry about your dad. You worried about him and helped him so much. I hope your mum is coping – she must be an amazing woman.
You are a tsunami survivor, and your resilience is inspirational (you must get it from your mum). I know it can be lonely out there on the edge of the cliff, and you’ve had some cruel losses to cope with. But you are still standing and engaging passionately with life. As Gail said recently “Living like I’m not dying”. You do that magnificently and I’m proud to know you.
Janine is so right – I have 2 x bottles in the cupboard and I feel better just knowing they are there.


49-year-old non-smoker, dx stage IV NSCLC May 2010 (squamous tumour of the left lung with multiple brain metastases). Radiotherapy to chest and brain; progressed through two cycles carbo/gemcitabine. Repeated lung collapses; pneumonia in collapsed lung, Nov 2010; bronchial stent placed, Dec 2010. Declined second-line Taxotere. Mutation testing Feb 2011, surprise EGFR exon deletion 19. Started Tarceva (150mg), Feb 2011. Progression in liver and elsewhere, May 2013.

May 31, 2013 at 4:40 pm  #1256916    

judys

Jazz – I too am so sorry to hear about your father. Your incredible strength will resurface I’m sure. You’ve been one of my heroes here.


Never-smoker; Diagnosed 2/2007 at age 64 with NSCLC adenocarcinoma, Stage 3b. Carboplatin/taxol/avastin: 3/07 – 6/07; radiation 8/07 -9/07; Avastin 10/07 – 12/07; Nodules in prev.clear rt lung; repeated carbo/taxol/avastin 1/08 – 3/08; Tarceva 4/08 – 9/11; radiation to soft tissue mass between two ribs 10/11; Alimta 10/11 – 2/12; treatment break; return to Alimta 5/12 – 6/12. Taxotere 7/12 – 10/12; treatment break 11/12 – 1/13; scan showed progression 1/13; restarted taxotere with zometa 2/13

May 31, 2013 at 4:54 pm  #1256920    
Dr West
Dr West

Jazz,

I’m so sorry, both for your pains and for your father’s passing. You are a remarkable, inspiring person, even with all of the challenges you’ve faced.

-Dr. West

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