Suepm

I have VATS scheduled for next Monday--probable lobectomy (if the nodule is cancerous).  Anyone have any great tips for the hospital/recovery?  Bridget suggested getting a wedge pillow, which I already received and tested out--it's great and I can see how useful it would be for maintaining a good position during sleep.  I also got a locking mesh bag for my iPad, phone, etc.  Last time I gave birth and was in for a couple of days following a C-section, my wallet was stolen (yeah, I'm a prosecutor, should have known better) and credit cards run up.  Lesson learned--don't leave anything valuable unsecured in your room, even briefly.  
I've had three major abdominal surgeries in my life (counting the C-section) and I generally heal quickly, tolerate pain OK, and am anxious to get home as soon as is reasonable/safe to do so.  My surgeon predicts that (barring complications) it will be 2-3 days max.  I took today off so I'd be able to do some cleaning and laundry and stuff so I will come home to a clean house and not have to do anything but recover.  I live alone but have terrific, dependable neighbors at home all day, who will run errands or do anything I need help with.  The surgery will be on my left side, which at least means my dominant side won't be compromised.
I am fortunate, too, to work from home, and my job will accommodate a flexible schedule as long as I need it--I can work for a couple of hours as I feel up to it and then rest/take a nap.
So, is there anything anyone found particularly helpful or that you wish you had known/done before surgery?

Thank you all for sharing your experience . I did have a VATS and my incision is quite small . My surgeon talked a lot about post op nerve pain before my surgery but I haven't experienced that . I am very grateful . Take care and I will post pictures. Suepm


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Thank you all for sharing your experience . I did have a VATS and my incision is quite small . My surgeon talked a lot about post op nerve pain before my surgery but I haven't experienced that . I am very grateful . Take care and I will post pictures. Suepm


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Hi Lauren, I flew to out to Mexico City for a cryoablation/immunotherapy treatment that has not yet been approved in the US. However, my Dr. is from the states, where we initially met him. We have had an amazing experience and I am currently going through a strong immune response that involves fever and flu like symptoms as the body's immune system attacks the cancer, no fun to be sure, but exactly what the doctors want to happen.I know treatments like this are not the norm, but they do involve FDA approved immunotherapies, just used in a combination that is not yet approved in the states. Brief Opdivo infusions upon return are the next step followed by several scans to measure progress. I hope to share more upon completion of this protocol that is useful for Stage 4 patients especially. God bless.

Hi Lbelle ,


Thanks for the update . I was wondering how you were doing. Glad to hear you have a plan and are moving forward . God bless . Suepm


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Hi Lbelle ,


Thanks for the update . I was wondering how you were doing. Glad to hear you have a plan and are moving forward . God bless . Suepm


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Lbelle ,

I know this is such a shock . And you and your family are in my prayers. Did the oncologist have a treatment plan ?

Suepm


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Lbelle,
I join the chorus of disappointed survivors. Several have provided superb advice. These include: second opinion from ALK experienced medical oncologist and treatment at a world class treatment center if your insurance stretches.  You may need to only use this center to diagnose and devise a treatment plan for ALK rearrangement and administration may be able to be performed locally.
Take a couple of days to let this sink in. Do join the ALK Facebook group. Those folks truly understand the evolving treatments, drugs, and methods and can provide very useful advice. 
Stay the course. 
Tom

Lbelle78, I'm so saddened to hear this news. so many hugs and prayers being sent to you and your family. <3
I tested ALK+ as well, shortly after my lung cancer recurred in January. Now I'm taking Xalkori, one of the targeted drugs they use specifically for ALK+ NSCLC. (my point isn't to talk about myself, but to tell you that, once you have time to digest this incredibly emotional burden that's been thrust upon you, there are several treatments available. Researchers are looking at this mutation, and we are reaping the benefits. <3
I'm happy to hear you will get a 2nd opinion. I hope, if your insurance and finances allow it, that you will consider a specialty center. A doctor who specializes in ALK would be so beneficial, and I'd bet there is some sort of long distance treatment available so you don't have to move (I've heard of some patients having plans written up and sent to their local providers, etc). 
Regarding your oncologist's lack of hope: there is hope. There is so much hope, and so much opportunity for life and love and watching your beloved children grow, and standing by your husband's side as the two of you grow old together. 
I read an article the other day, and linked it below. I had been looking for information on the ALK mutation, and here I happened across the story of a young man who was diagnosed with Stage IV, ALK+ NSLC while in his twenties.
Spoiler alert: There is always hope!
http://www.curetoday.com/publications/cure/2015/lung-2015/hitting-a-target-in-advanced-non-small-cell-lung-cancer?p=1

I'm sorry to hear about your diagnosis. I know you worked hard to get the robotic surgery you chose. So now you'll need to work hard to get a second opinion and hang in with treatment. You can do it! There are so many people on this site with Stage 4 who are living good lives; I hope they will inspire you.
 
 

Thanks for the awesome advice, all great suggestions and we are definitely going to seek another opinion. Appreciate all the support.

Linnea, that's so encouraging, thank you. I will definitely be checking you out. I'll read more about your journey.

I am so sorry to hear this. I was 32 when first diagnosed and 34 when I relapsed at stage four.  I know the pain and grief you  your family feel is indescribable and overwhelming, but I promise you it will get a little better every day. Okay...maybe not every day in the beginning, to be honest. But eventually, it gets better little by little, day by day. 
The only silver-lining I can offer you is that for some reason the ALK rearrangement seems to be "more treatable" than most  mutations. We are less common than a lot of them, and yet we have a ton more drugs than even the really common mutations! And in that way we are lucky. We are the unlucky-lucky ones?  
Also, I have two recommendations for you. 1)  get a second opinion, and maybe even a third. It took me months to do this because I was so overwhelmed, and I regret that decision every day. I personally know someone who is stage four and after chemo was able to have surgery and is now been clear of cancer for four years!   Do not go to a good hospital, go to the best. I again made this mistake, please learn from me. Here are the best, in my opinion (for lung canver): MD Andersen, Massachusetts General - Dr. Alice Shaw, and University of Colorado - Dr Ross Camidge.  Both of these two are ALK experts. If these aren't an option, there are many other wonderful lung cancer hospitals, you can find some recommendations at the Lungevity website and the Bonnie Addario website.
2) Join the Lungevity ALK and ALKies Worldwide  Facebook pages. Here you will not only find support, but advice, help and more information about lung cancer and the ALK mutation than even most doctors know. 
https://www.facebook.com/groups/ALKIESWW/
https://www.facebook.com/groups/ALKlung/

Hi, I am sorry that you have received this devastating news but do know that being ALK positive means that you likely will have multiple treatment options. Also know that lots of us mutants have outlived predictions. I was diagnosed at the age of 45 in 2005---I am ALK+, have been stage IV for most of my journey, and I just marked 12 years since diagnosis. Check out my blog if you'd like more information about living (for a long time!) with ALK+ lung cancer: www.outlivinglungcancer.com  You are not alone. xoxo Linnea

Lbelle ,

I know this is such a shock . And you and your family are in my prayers. Did the oncologist have a treatment plan ?

Suepm


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Lbelle, we will pray for a clear report as well .


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Lbelle, we will pray for a clear report as well .


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Lbelle , EBUS ? So glad you liked the new surgeon . Prayers

Hi Lbelle ,

I had asked my Surgeon if we could wait 3weeks for my surgery . I had been sick for several months and I was trying to clear up my lungs . He didn't have any problem with waiting . I will be interested in hearing about your second opinion . And praying for peace comfort and wisdom . Suepm


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Hi Lbelle ,

I had asked my Surgeon if we could wait 3weeks for my surgery . I had been sick for several months and I was trying to clear up my lungs . He didn't have any problem with waiting . I will be interested in hearing about your second opinion . And praying for peace comfort and wisdom . Suepm


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Hi Lbelle ,

I had asked my Surgeon if we could wait 3weeks for my surgery . I had been sick for several months and I was trying to clear up my lungs . He didn't have any problem with waiting . I will be interested in hearing about your second opinion . And praying for peace comfort and wisdom . Suepm


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Lbelle ,
Sorry you are going through this . This journey can be very frightening .My
experience with the VATS robotic surgery was good . I have scarred lungs from a lifetime of asthma and pneumonitis. Even with my history of lung disease I woke up breathing on my own . I spent 2 nights in ICU , one night because they couldn't find me a bed in the step down unit until the next day . I was in the hospital about 8 days . A little longer then some . My chest tube was putting out a lot of fluid . I am a nurse , but believe me that goes out the window when you're the patient and the diagnosis is cancer . Anyway I did get IV Tylenol the first few days and it really helps with pain . Problem is it is expensive . The brand name is Ofirmev . I just wanted you to know my experience was good . I just had my 6 month visit with the oncologist and my CT and tumor markers are good . I had adencarcinoma Stage 1a and they did a right upper lobectomy . I hope that helps . This site has been such a help to me I hope it is to you as well .

Suepm


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Lbelle ,
Sorry you are going through this . This journey can be very frightening .My
experience with the VATS robotic surgery was good . I have scarred lungs from a lifetime of asthma and pneumonitis. Even with my history of lung disease I woke up breathing on my own . I spent 2 nights in ICU , one night because they couldn't find me a bed in the step down unit until the next day . I was in the hospital about 8 days . A little longer then some . My chest tube was putting out a lot of fluid . I am a nurse , but believe me that goes out the window when you're the patient and the diagnosis is cancer . Anyway I did get IV Tylenol the first few days and it really helps with pain . Problem is it is expensive . The brand name is Ofirmev . I just wanted you to know my experience was good . I just had my 6 month visit with the oncologist and my CT and tumor markers are good . I had adencarcinoma Stage 1a and they did a right upper lobectomy . I hope that helps . This site has been such a help to me I hope it is to you as well .

Suepm


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Lbelle ,
Sorry you are going through this . This journey can be very frightening .My
experience with the VATS robotic surgery was good . I have scarred lungs from a lifetime of asthma and pneumonitis. Even with my history of lung disease I woke up breathing on my own . I spent 2 nights in ICU , one night because they couldn't find me a bed in the step down unit until the next day . I was in the hospital about 8 days . A little longer then some . My chest tube was putting out a lot of fluid . I am a nurse , but believe me that goes out the window when you're the patient and the diagnosis is cancer . Anyway I did get IV Tylenol the first few days and it really helps with pain . Problem is it is expensive . The brand name is Ofirmev . I just wanted you to know my experience was good . I just had my 6 month visit with the oncologist and my CT and tumor markers are good . I had adencarcinoma Stage 1a and they did a right upper lobectomy . I hope that helps . This site has been such a help to me I hope it is to you as well .

Suepm


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Seeing pulmonologist today


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