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MARIA.CHAMORRO

New Member from NC

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Hello everyone! My name is Maria and my father was diagnosed with Stage IV lung cancer about two weeks ago. Needless to say, this was a shock to all of us because my dad has never been sick in his life, other than the casual cold.

On 14 January, my dad called me since I live in the same town and mom was in Florida, because his right side started feeling numb. At that point we thought he was having a minor stroke but he refused to go to the hospital that day. At the time we also thought he probably fell but didn't want to tell us since he was walking stiff. Anyhow, I made a doctor's appointment for a few days later. By then my mom was back and she called me to tell me the doc thought it was a minor stroke so he was rushed to the ER. There they did some tests and they found a mass in his brain, which was causing pressure which in turn was causing the numbness on his right side. The doctors also found a mass in his lung. That same night he was taken to UNC Hospital at Chapel Hill. Needless to say, I lost it. Luckily my brother was there to handle those first 12 hours. It was the most hectic 12 hours of my life.

He spent a week at UNC, where it was determined it was lung cancer, and of course it spread to his brain and some lymph nodes in his chest. This week dad had his first Cyberknife radiation treatment for the brain mass, and he seems to be doing better, and his motor skills have improved significantly. This coming Tuesday, he has the second visit with the oncologists. During the first visit, they still did not have the confirmation of which type of lung cancer it is, so here is hoping on Tuesday we can get an answer as well as his treatment schedule.

A few days ago, I moved in my parents with me into my house so I can provide the care my dad needs, as well as helping him financially since he will not be able to work and provide for him and my mom. And I do not mind one bit. My main concern is to minimize the stress on my father while he is getting his treatment. It is just going to be an adjustment. Luckily we love each other and have no issues :). Emotionally I am doing better. Once the shock wore off, I went into what I call "military mode" (I'm in the Army). I was like "ok, what do we do? What's next? etc." My father was in the military and I think this mode has put him more at ease. Yes, we are funny that way. And he is being a trooper.

Now, I do have a question for those with experience with this: my mom is really having a hard time with this. to the point that she seems like she is detaching herself from this situation. I have spoken with her, as well as my brother, and we really had to explain her attitude is basically telling us that she feels this is an incovenient for her. I know she loves my dad. But it is so frustrating. Anyhow, this is us in a nutshell.Glad to be here although I wish it was under other circumstances.

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Maria, I was the wife of a lc patient. I really doubt that your Mother is finding this inconvenient as much as she is totally scared. Her love has been dx'd with a very serious disease, she has just been moved, her financial situation has changed, etc. etc.

Give her some time, recognize that while she is not the patient, her life has just done a 180.

Maybe she could come here.

I hope your Dad's treatments are successful.

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I'm so sorry to read about your dad. I'm so glad that they have you to help care for and provide for them during this difficult time.

I agree with Ginny too. You mom could just be in shock.

I was my dad's main caregiver even though my mom was there....her method of cargiving was very different from mine and because of language limitation she couldn't help with the medical side of his care, medications, etc.... That kind of made her feel bad that she couldn't do that for him...and I think as thankful as she was for all my help--she resented it a little too...he was, afterall, her husband.

She seemed to feel best when she could care for feeding him and getting things he needed. That made her feel uesful. And I ALWAYS remembered to ask her opinions before doing anything or making any decisions..making her as much a part of dad's care and the caregiving as possible.

Maybe there's a way your mom can engage that will make her feel useful in her husbands care and also elimate some of her fears?

Anyway, I just wanted to pop in and welcome you here and let you know that you are not alone. We've walked this walk and we are here for you.

Keep posting and keep us posted.

Hugs and prayers,

K

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Welcome Maria. Sorry for the circumstances that bring you here. It sounds as though the military mode that works so for you are you Dad, well not so much for your Mom. I agree with the others, in addition to getting your Dad's dx, in itself a mindblowing experience, she's had to move in with you and foresee a total reversal in her financial situation. That, in itself, can be difficult as we begin to age.

Stay in touch. Let us know what they finally come up with for a definitive dx and stage. Lots of people here with lots of treatment/caregiver experiences willing to share.

Judy in KW

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Maria - welcome. Your folks are sure lucky to have you. The initial period after diagnosis is always the scariest. My parents had the best marriage of anyone I've known, but my dad developed heart trouble and began failing about 2 months before he died and I couldn't believe how my mother acted. It took me awhile, but I finally figured out she was just terrified she was going to lose him after 62 years. I think she believed if she just ignored it, it would not be. As Judy said, to have to move in with a child - no matter how much the child may want us - can also be very difficult. I imagine it seems her whole world has turned upside down. She may just need some time to adjust to all of this. It might also help if she had someone (a minister or counselor perhaps) that she could talk with.

I hope you will let us know how you and your folks are doing.

Diane

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Maria, I notice it's been awile since we met. Check in when you can and let us know how your Dad is doing--dx, treatment plan etc. Also, hope your Mom is adjusting to the changes in her life.

Judy in KW

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Hi Maria, I'm so glad KW Judy brought this back. I missed it the last time. I am in agreement with the others. So much can be going on in Mom's mind right now. An update would be so appreciated!

Also we have a board index here that is specifically for Caregivers. I've been both, the person with cancer, and the Caregiver, so I've been fond of this section. Here's a quick link there. viewforum.php?f=12

This is a link I wrote on the Stress of Caregiving and how we react to it. viewtopic.php?f=12&t=45177

Lastly, on the home page of Lungevity.org are all kinds of resources to help you as you move through all of this. One of the pages is the Caregiver Resource Center. I've put that link here too: http://events.lungevity.org/cg/index.html

Let us help if we can.

MI Judy

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Hello everyone! Sorry I have been absent for so long. But you are too kind to want to check up on us. :) Well, dad had his first chemo on 23 FEB and it was chaotic to me from a caregiver's standpoint. Let me backtrack:

On 20 FEB, my dad started having issues with the mobility on the right side of his body again, the same way as when we initially took him to the hospital and he was diagnosed with the cancer in the lungs and the mass in the brain. We assumed that it happened because it was two days after he finished his steroids. But the on call oncologist recommended that we take him to the ER just to make sure. They started him on the steroids and he got better but he is having issues dragging his right leg a bit. We have an appointment on Friday for a follow up on the Cyberknife procedure he had on 14 FEB, so we will bring this up.

Then on 22 FEB, I had to rush my mom to the same ER and she was admitted with heart issues, and the doctors scheduled a cath for the same day as dad's chemo. Luckily my brother was able to stay with her while I took dad to the chemo appointment.

Dad received his first chemo on 23 FEB and everything went well. I got some really good advise from another thread I posted on this community board, so I went fully prepared. But really, it was not necessary because at the infusion center they provided everything my dad needed. Dad received a combination of carboplatin and pemetrexed, and he did great, although he got really cold when he received the pemetrexed. But he was so great through the whole thing. He even asked me to take a photo and email it to my brother with the caption "this is what hot looks like"... he made me laugh with that, especially because I think he could tell I was about to implode when he started getting the carboplatin. Not sure if this is natural but in my head I kept thinking "Oh my God, my dad is getting chemo, he is getting poisoned!" and I think I started hyperventilating a bit. But his smile comforted me tremendously.

After the chemo, he did good but on day 3 he lost all apetite and only wanted fluids, which the people on the other thread recommended I kept an eye on, so we gave him plenty of fluids. He was like that for 2 days but then he was able to handle watermelon. Oh, this fruit became our new friend. Eventually he started eating a bit more and his appetite is now back to normal. The only thing we have noticed is that his feet get a bit swollen and he has this "weird sensation" as if he is wearing socks, but we were told this wa normal. Still we have been giving him foot massages and I think he likes them :-)

My mom has finally come to terms with what is going on, and she has opened herself to how she is feeling so we all seem to have a better understanding of how everyone feels.

Through it all, the one thing I did not expect was for caregiving to be so hard. I am getting teary eye as I write this because I am feeling like a rollercoaster: I am so happy to be able to do this for my parents (especially my dad), But then I feel the pangs of resentment because I have had to change my life completely to accommodate theirs, then I feel guilty for feeling resentment. I feel alone most of the time, like the rest of my family has distanced themselves from the situation, and I have this entire responsibility on my shoulders. But then I hold on to my faith with both hands, and I feel better. I didn’t realized how little I have taken care of myself since the diagnosis and my body finally rebelled against me this past weekend when I spent the entire weekend with nauseas, vomiting, and just feeling horrible. But I got the hint. I have to take better care of myself.

and that is about it in a nutshell...sorry for the long email. But thanks for checking up on us!

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sorry things were crazy but glad they are settling out somewhat!Hope Your mom and her heart is ok also!!!

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Sorry I have to welcome you again Maria--this time to the new normal for your Dad now that he's in treatment. I said before it sounded like you were going to have the weight of the world on your shoulders. It does sound positive that your Mom was finally able to open up to you and reality.

After what you went through this weekend, I'm hoping you can give in to asking for help. I mean asking directly. Tell a family member or friend you need them to come and be with your parents. Then take that time to walk in the park, go to a movie or do whatever would calm you.

I hesitate to say this is your new normal Maria. My wish is for you to be able to settle into something that takes into account the reality of your parents situation that also leaves time for you. Take care and keep us posted.

Judy in KW

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"Through it all, the one thing I did not expect was for caregiving to be so hard. I am getting teary eye as I write this because I am feeling like a rollercoaster: I am so happy to be able to do this for my parents (especially my dad), But then I feel the pangs of resentment because I have had to change my life completely to accommodate theirs, then I feel guilty for feeling resentment. I feel alone most of the time, like the rest of my family has distanced themselves from the situation, and I have this entire responsibility on my shoulders."

Hi Maria, I put what you wrote in quotes, and all I can say is this is EXACTLY how I felt when my Mom was dieing of lung cancer. For whatever reason, my 3 brothers distanced themselves and would not become involved in her care. I was 40 years old at the time, and it was so hard. My step-dad was elderly and in denial of my Mom's illness, so I had to care for him and his fragile heart as well.

It is exactly as you describe. A roller-coaster. Thank God for making roller-coasters so we knew how to label our feelings when they are just crazy and out of control, and we don't know what to do. We want to help, and we are glad we can be there, but still. It's just so hard.

I had to put my life on hold too. My Mom's serious illness' began in 1989, and she died in 1996. In the last year of her life, I had to basically beg my husband to understand. My phone rang at all hours, and my boss (fortunately) had to be understanding. They didn't live with us, but I lived a couple of miles from them, so I was over there a lot.

Looking back? As difficult as it was, I am so glad I was there. Now that time has blurred the rough stuff, what shines through are the memories of the times we had that were so poignant. Conversations happened that never would have if I hadn't been there.

You wrote "asked me to take a photo and email it to my brother with the caption "this is what hot looks like"... he made me laugh with that, especially because I think he could tell I was about to implode when he started getting the carboplatin". That memory will make you smile for a long time. Dad being silly and trying to not only make you smile, but your brother as well! What a good man.

Things like this "But his smile comforted me tremendously." You get these precious times with him. Hang on to them! They are gifts. The foot massages! How wonderful that you get to comfort him with this! My Mom loved them as well. I remember painting her toe nails a bright beautiful red color, and she kept looking at her toes and smiling. Now I doubt Dad would enjoy that, but it's those little things that make it all okay. :-)

You mentioned your faith. Hang onto that too. It was all I could do to face the bad times, and only with prayer and faith was I able to understand that this is part of life, and to look for those good moments to tuck away for the future.

My Mom died in 1996, and today my memories are only of the special times we shared, just us two.

As far as you goes. This is not good! "I didn’t realized how little I have taken care of myself since the diagnosis and my body finally rebelled against me this past weekend when I spent the entire weekend with nauseas, vomiting, and just feeling horrible." I did that too. But someone how we need to find ways to take care of us along with everything else. If you scroll back up to my last post to you, you will find links to places that can help you with this. A hot bath with sweet smelling soaps after Dad goes to sleep, quiet time with a book you love, snuggling up to someone that can give you a bit of care, whatever it is, find those things so you can be the best you can when the time calls for it.

Take care Maria. Your post has struck my heart strings because it is so similar to my experiences. God bless you for the goodness you are doing right now for your Dad and for your Mom.

Judy in Mi

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Hello, everyone! I haven't checked in a while mostly due to work and a host of other things going on in our lives besides dad's illness. Well, after 8 cycles of chemo today we were told that dad's cancer is growing. Not a lot but is definitely growing. And maybe I should have been more proactive in asking how much it grew but I was a bit shell shocked. Anyhow, what is next? There are three choices they gave us, and of those we are leaning towards a clinical trial (LCCC0921) that involves using Pazopanib, which is used for kidney cancer. Apparently dad is in that window when now is the time to do the clinical trial if we decide to do so. We want to wait on the other choice which is chemo using another medication (and I cannot remember the name) which will be a lot stronger and will cause more fatigue since it can take a toll on the body. I was just wondering of any of you have been part of this trial since is a multi-center endeavor. Thanks!

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Pazopanib

That seems to be an inhibitor of vascular endothelial growth factor receptor (VEGF receptor) and platelet-derived growth factor receptor (PDGFR). Have you found that you've got one of those driving the cancer?

I think Avastin also targets VEGFR, too.

I think about 4% or 5% of squamous cell carcinoma has a PDGFR issue. Was the cancer tested to determine if it has an PDGFR mutation (or amplification or up-regulation)?

Best hopes,

Craig

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this might give you some starting points for research. We need more people who are eligible for trials to find new treatments. sadly the diagnosis is received too late for most trials. I kind of hope Dad will try it and be a pioneer in Cancer research and not think of himself as a guinea pig in a trial..

here is link to get started on what he is getting into hopefully!

http://clinicaltrial.gov/ct2/results?term=LCCC0921

he could probably go back to conventional treatments if trial does not work for him I think and hope of course!!

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In those two trials it seems like it is intended to deal with progression after Avastin (bevacizumab). Had he tried that before and progressed?

Or is it a different trial where maybe it's being tested as an alternative that might be better in some way?

Best hopes,

Craig

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Maria,

I sort of see the logic then. I don't know the odds of it working. It depends on whether the pazopanib is correctly addressing whatever make the Avastin (bevacizumab) ineffective.

Given Avastin was used, I'd guess it is an adenocarcinoma, is that right? Have tests of driving mutations been done, e.g., EGFR, ALK, KRAS? (I'm wondering if there might be some other drug with much higher odds of working well.)

Best hopes,

Craig

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Ok, I spoke with the nurse today and got all the options/names :-)

Option #1: start treatment with Tarceva (Erlotinib) which is a targeted drug.

Option #2: start treatment with Docetaxel

Option #3: start the clinical trial

We have a phone conference with the oncologist later today, so we can discuss the pros and cons. Wish us luck!

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Maria:

Good luck with you conference with your dad's oncologist. I am not sure if your dad has had genetic testing, but the Tarceva is a genetically targeted therapy that is oral pills as opposed to infusion. I started on Xalkori in January of this year. I have the ALK translocation and Xalkori is targeted specifically for that mutation. I began to see results in 2 weeks. My collapsed lung reopened, my adrenal tumor disappeared, the cancer nodes in my other lung are gone and my liver and bone metatases are stable. There are even some signs of healing in the bones. Not everyone gets such good results, but if your dad does have the EGFR mutation, the Tarceva is targeted specifically for that mutation.

My side effects from Xalkori have been minimal and I also had carboplatin and pacitaxel with terrible side effects with those infusions. The advantage to targeted therapy, when it works, is that it does not destroy healthy cells, just the mutated cancer cells.

Ask lots of questions and I am sure you will make the right decision for your dad. I was very discouraged when infusion therapy did not reduce my cancer tumors, but now am doing very well. I have stage 4 adenocarcinoma, very advanced spread, so I feel very blessed to have found a treatment which can't cure me, but is giving me more quality time.

I hope you can choose a treatment that will be as effective for your dad!

Susan

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Maria,

Is your Dad's cancer driven by the EGFR mutation? If so, which specific variant? (Some specific ones are known to be resistant to Tarceva, but usually Tarceva works.)

If the cancer isn't driven by the EGFR mutation, there's still a chance Tarceva might work, but it's not a large chance.

If the cancer isn't driven by EGFR, then it means it might be driven by something different, like ALK for which there's a usually-effective inhibitor drug that would (like Tarceva for EGFR) likely work for a number of months.

So, which specific type of cancer is it, adenocarcinoma? And which specific mutations have been tested? EGFR? ALK? KRAS? anything else? What were the results of those?

Also, is there a smoking history? (That can affect the odds of certain driving mutations.)

Best hopes,

Craig in PA

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Wishing you luck Maria,

I hope the call went well and there is a treatment in place.

Please feel free to start another thread in one of the other forums too. Keeping you and your dad in my thoughts and prayers.

Please give us an update of how you both are doing,

Hugs,

KatieB

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