Jump to content

Shocking news


Lbelle78

Recommended Posts

After going in Friday for a robotic upper right Lobectomy, I woke up to learn that the surgery could not be completed because the surgeon saw spots in the lower lining of my lung. He completed a small wedge resection for biopsy and closed me up. My family and I have been heartbroken to put it mildly. This jumps me from a "curative" stage 1 to stage 4 at age 38. I do have the ALK mutation, but the oncologist today was not very hopeful. We have cried all day long, and my poor husband sobbed for an hour driving back.This is so unbelievable after being so excited for a good outcome. I so want to be here for my children and family.

Link to comment
Share on other sites

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

Link to comment
Share on other sites

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/

Link to comment
Share on other sites

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.

 

 

Link to comment
Share on other sites

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

Link to comment
Share on other sites

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

Link to comment
Share on other sites

  • 4 weeks later...

Hi, Lbelle,

Just wanted to check in and see how you're doing. Please know that we are here for you and share an update when you can.

Lauren
--
Digital Community Manager
LUNGevity Foundation

Link to comment
Share on other sites

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.

Link to comment
Share on other sites

  • 3 weeks later...

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.

Guest
Reply to this topic...

×   Pasted as rich text.   Restore formatting

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.

×
×
  • Create New...