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Hello folks

As some of you know, my husband had lobectomy last year, July. A pet scan was done three months ago and we got an all clear. But unfortunately last week , we got a CT thorax and abdominal done and found that there is a legion seen in liver. I know he is stage four now and there is nothing much  to hope for . Some more tests are going on and it will take at least a week to get a clear picture of the extent to which the cancer has spread. I have two young kids a two and six years old, I am not sure how I am going to keep things together. I don't want to disappoint those who just have lobectomy. May be this is whatGod has planned for us. I have accepted the truth and have come to terms with it. But still those why me moments take me for a ride. Anyway I will keep updating you guys as and when I get them and suggestions are more than welcomed.

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Hello hope16.  I’m sorry to hear about your husbands new issue.  Recurrence is an unfortunately common challenge of this disease.  Why do you think the liver legion is cancer?  Has it been biopsied?  As with lung nodules, spots on the liver can be something other than cancer.  If it is cancer it is good to know if it is a recurrence of his lung cancer or a new cancer.  Did your husband have biomarker testing done of his lung cancer? 

Hang in there.  

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Hi Hope16,

I am sorry to hear about this new finding with your husband.  I echo Curt's question, has the lesion been biopsied/how do they know it's cancer?  My mom has had a nodule pop up on some CT's of her abdomen that was not noted a few years back.  It's likely nothing and we wouldn't know anything about it unless she was having all of the scans like she is now.  Weird things pop up all of the time that we would never know about but because she is getting scanned all of the time, we see them.

That being said, if the lesion is lung cancer progression, it is not the end of the world.  I thought it was when my mom was diagnosed with her progression.  I thought she was going to die tomorrow and there was no hope, that was until I found LUNGevity and met those who have had several recurrences and are continuing to live their lives despite lung cancer.  My mom is one of those people now.  Your husband can be too.  Advancements in treatment have come a long way.  My mom has no evidence of disease once again because of those advancements. Lung cancer progression is no longer a definite death sentence. 

We all get those "why me" moments, caregivers and patients alike.  But don't throw in the towel yet.  Please keep us updated and know that we are here for you.

Take Care,

Steff

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Hello my dear friend, 

I'd like to echo the words of both Steff and Curt.  When I saw your post it occurred to me that your hubby was also practicing some complementary therapies.  It's quite possible the lesions in the liver could also be from supplements.  I had this happen in my 30s.  For now, I will  lend you the ALK Positive team bible verse: Joshua 1:9.  We are always here for you.  Please let us know what the next steps are and we can wind up the prayer posse for you.  

Michelle 

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Hope,

I echo the question of the biopsy for the liver met. This is so important because I’ve had many CT liver met scares. My liver still scares the rookie radiologist because hypodense cysts are often called out as mets, but my oncologist has seen so many, he sends a note to the boss radiologist asking for a journeyman’s read. 

If it is a met, it is way too early to throw in the towel. I had 4 recurrences on the road to NED, so I know what it feels like. 

Let us know the biopsy finding and we’ll take it from there. Most importantly...

Stay the course. 

Tom

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Hello Steff, curt, Michelle and Tom

Thanks for your replies. He has two spots , one on first rib and another in liver. Liver met is very deep and a small spot so biopsy is next to impossible. His CT pet scan showed metabolic activity in both the spots with max SUV 12 which leaves little doubt about it being cancer. Thankfully brain MRI is clear. 

The plan is to start him on afatinib as he is egfr positive. And get the two Mets cyberknived.  We are going for a second opinion and planning to meet an oncologist who deals with the lung cancer only.

I am devastated because I want to grow old with him and want him to see my kids graduating, marrying etc. Seems like a distant dream now. He is just 36. How long can he hold on?

 

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Afatinin can be an affective treatment for slowing the progression.  Cyber Knife is also an effective treatment.  The fact that he is young and EGFR positive are both in his favor.  Do you know what specific EGFR mutations he has?  Some are more receptive to certain treatments than others.  

Keep holding on to hope.  Recurrence and progression aren’t what you want, but there are treatment plans that can keep him around for a long time and there are advances happening, especially with the treatment of lung cancer mutations. 

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52 minutes ago, Curt said:

Afatinin can be an affective treatment for slowing the progression.  Cyber Knife is also an effective treatment.  The fact that he is young and EGFR positive are both in his favor.  Do you know what specific EGFR mutations he has?  Some are more receptive to certain treatments than others.  

Keep holding on to hope.  Recurrence and progression aren’t what you want, but there are treatment plans that can keep him around for a long time and there are advances happening, especially with the treatment of lung cancer mutations. 

He is Exon 21 .

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I was really hoping the scans were not a recurrence. I’m so sorry you are going through this.  You may have seen in some of my posts a book I refer to as the EGFR survivors guide, “ Something More Than Hope” by Diana Lindsay.  It’s actually two books, when you flip it over Diana’s husband wrote the caregivers guide.   I think you might find it helpful in how to manage through this time. 

A second opinion is a good choice since your husband has not had any other form of targeted therapy. Perhaps a clinical trial with combination inhibitors could be considered? 

Stay strong in your faith during hubby’s next treatment phase. You’ve been such a source of inspiration to me.  Tom once said it’s important to keep your “battle rattle”,  hold onto your hope.  The science is on your side. 

Michelle

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Michelle

Thanks for your kind words. The best part here is that one doesn't need to explain what he/she is going through. We all are on the same boat. Yes it's difficult to stay hopeful but at the same time , we know that as the time passes things become easier. All my life I have always been scared about the loneliness. Now when I think about liver Ng without my husband, it scares me to death. The irony is my husband is sad about the dying part and I am sad about the living. I don't want to live without him but I am punished to do so. 

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Hope,

Let me just add to my fellow members here that we're sorry to hear about this turn of events.  You're going through so much now and I understand what you're feeling.  You've been given some great tips and information and my addition would be to try and stay in the present.  I am an expert at catastrophically ruminating and drawing the worst conclusions possible.  I did it with my recent lung cancer and my previous (2010) colorectal cancer.  The great people here helped me to stay in the present, understand the possibilities and take each day on it's own.  It was a big help and I couldn't have gotten through this without their support.

Stay calm and fight each day's battles that day, deal with the future in the future.  There are so many advances in treatment and even trials that are happening that there is always hope for your husband, spend your energy learning about those.  I'll also keep you in my thoughts and prayers (hope you don't mind).

Lou

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6 hours ago, LouT said:

Hope,

Let me just add to my fellow members here that we're sorry to hear about this turn of events.  You're going through so much now and I understand what you're feeling.  You've been given some great tips and information and my addition would be to try and stay in the present.  I am an expert at catastrophically ruminating and drawing the worst conclusions possible.  I did it with my recent lung cancer and my previous (2010) colorectal cancer.  The great people here helped me to stay in the present, understand the possibilities and take each day on it's own.  It was a big help and I couldn't have gotten through this without their support.

Stay calm and fight each day's battles that day, deal with the future in the future.  There are so many advances in treatment and even trials that are happening that there is always hope for your husband, spend your energy learning about those.  I'll also keep you in my thoughts and prayers (hope you don't mind).

Thanks for the same advice.

I will definitely try to stay in present.

 

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Thanks for asking Michelle

We are going for a second opinion.. in couple of days will go for it. Rest all the same . I am still in limbo...not much focused now a days. 

Anyway how are you? Hope you are doing well. I pray for all of us. 

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Hey there-

Status quo here- The Hospital is closing their Integrative Medicine Program next month so with Tomm’s advice, I’m on the hunt for a new hippie doctor.  I’ve got some appointments out of State in the next two months, so that’s not going to be fun.  

When I was initially diagnosed they doctor’s were thinking Stage III however when the PET scan came back it was a different story with small bone Mets. 

I just kept saying to myself- Stage is just a number therefore diagnosis does not predict prognosis. There are many long term survivors out there.  Stay strong in your faith.  I hope the second opinion goes well.   

Keep us posted!

Michelle

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Hi Hope

Wanted to let you know I’ve been thinking about you.  How did the second opinion go? 

I found a new hippie doctor, she’s from India- tells me that broccoli and bitter melon are king cancer fighters (along with heavy douses of turmeric)

Let us know. 

Michelle

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Hi Michelle

That's really very kind of you. I am fine. In second opinion as eel the same the treatment is suggested. So hubby is taking afatinib which is causing all the side effects that are listed. He has lost a lot of weight. Worried for him.

Being a young mother with two kids I am trying hard to earn a living . Till now I was a stay at home mother who loved to be around her kids. But God had different plans.

 

I also think about you and many others and do pray for all of us. I just hope and pray that the cure is around the corner.

 

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Hi Hope, 

So nice to hear from you!  You’re never far from my mind. Our roles were reversed as I was the primary bread winner, now hubby is going to be faced with re-entering the work force. Somehow I think God wants us to pave the way forward, we don’t think these driver mutations are going to be rare in a few years. There are just too many of us & growing.  My LC support group is “all mutants”.  We’re figuring out how to live with a chronic disease.  

The side effects will start to subside in a few months.  Even if they have to do a small dose reduction these drugs are very, very effective. No one really knows how to dose them.  

Stay strong. I know you can do this....

A big hug to you guys. 

Michelle

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 I think I'll chime in. I guess not everyone has the same faith as me but I can share this letter from Paul the apostle. God sometimes allowed him to do great miracles and sometimes not. But I will say this. Paul was in prison and was suffering in there. When he wrote one of his letters to a church he established he directly attributed the prayers from his church that was giving him the stregnth to make it through.

    And the same with us. If we meditate on the prayers that are said in our behalf we can receive the same help that Paul got when he was in his hardships!!!

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On 5/13/2019 at 9:15 PM, hope16 said:

Hello folks

As some of you know, my husband had lobectomy last year, July. A pet scan was done three months ago and we got an all clear. But unfortunately last week , we got a CT thorax and abdominal done and found that there is a legion seen in liver. I know he is stage four now and there is nothing much  to hope for . Some more tests are going on and it will take at least a week to get a clear picture of the extent to which the cancer has spread. I have two young kids a two and six years old, I am not sure how I am going to keep things together. I don't want to disappoint those who just have lobectomy. May be this is whatGod has planned for us. I have accepted the truth and have come to terms with it. But still those why me moments take me for a ride. Anyway I will keep updating you guys as and when I get them and suggestions are more than welcomed.

 

On 6/17/2019 at 11:44 AM, Irwin1 said:

 I think I'll chime in. I guess not everyone has the same faith as me but I can share this letter from Paul the apostle. God sometimes allowed him to do great miracles and sometimes not. But I will say this. Paul was in prison and was suffering in there. When he wrote one of his letters to a church he established he directly attributed the prayers from his church that was giving him the stregnth to make it through.

    And the same with us. If we meditate on the prayers that are said in our behalf we can receive the same help that Paul got when he was in his hardships!!!

We met a man a couple of weeks ago and he told us he was given 1 week to live due to stage IV Bone cancer. We saw him again this week and he said it's gone????

GOD HAS THE PLAN AND THE ANSWERS. We have to believe in MIRACLES. GIVE YOUR HEART TO JESUS CHRIST AND LET HIM WORRY FOR YOU MY FRIEND.

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I’m so sorry hope.....it’s ok to feel like that. 

Onward! Stay the course! - that’s great advice, but sometimes just a “I’m sorry you are going through this”, is all that should be said. 

Thinking of you and your family❤️

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Hope

What a beautiful name. I've given up looking for the "perfect life" and there are still so many paths to travel. You're on a difficult one right now and none of us can guarantee an outcome, but there are some here who have been where your husband is now and their stories have had good outcomes. I'm sure they had down days and terrible side effects, but they survived. You need to stay strong for your husband and those precious children. 

Take care of yourself, get rest, eat well, spend some time alone, meditate or pray or just be quiet and peaceful for a while to heal and strengthen yourself. 

At one time I was sure that God had abandoned me as well... then I came here and realized he had sent me to a new kind of family. One where I could share my fears, pain and progress and not feel embarrassed to do so. I got great feedback and support that helped me through my cancer journey. I'm still on my own road to recovery but I just wanted to let you know that I doubt you've been abandoned... After all, there are doctors to help your husband, advances being made every day and stories {like Tom's} of battle and survival. Last of all you have all of us. We understand your pain and your journey. We're pulling and praying for your husband, you and your family. You've been surrounded by people who care and that is a beautiful gift. 

Stay strong and don't lose faith.. 

Lou

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