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My treatment plan


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I had my chemo class today. Not for traditional chemo but for my targeted therapy. I have the mutation BRAF-V600e and the pills to target are Dabrafenib and trametinib.  My insurance has approved them and the pharmacy should be calling to discuss delivery, hopefully I will start early next week. They have the typical side effects as well as more serious ones as with everything. I will get an ecg on Monday as one side effect is hardening of the heart lining, so this will be the scan that we study from and compare to. I will be on these pills as long as I tolerate them and as long as they work. I will have blood work in 4 weeks to check my levels. A scan in 3 months because I should be able to tell if they are working because of the lymph nodes that I can feel in my neck, if I don’t notice any difference I will have a scan earlier.

I thought I would feel different knowing I’m so close to starting my plan but I’m feeling down and emotional 😥

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I think that's pretty normal, Shella, for how you're feeling starting on a new treatment. I'm betting things will start looking up once you get going.

I'm sorting out info about three different clinical trials--my oncologist said there are literally hundreds out there that I might be eligible for. In some ways that's a good thing, but still a bit overwhelming. And then once I decide, I'll probably have lingering second thoughts. 

I think we gotta just keep putting one foot in front of the other, and trust that the positive feelings will follow. 

Sending a hug of encouragement.

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Shella - this whole process is an emotional roller coaster. For the first four months after diagnosis, I did okay. But then I discovered my cancer had spread and I also had thyroid cancer. I started spiraling quickly so my oncologist put me on anti-depressants. Those meds put me back on the right path and kept my head in a good space when I was diagnosed with two recurrences. Meds may not be for you but please take care of your mental health. A positive attitude will be an asset.

Hang in there and keep us posted.

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Hey look on the upside...you have a plan in place and now you just have get on the road. As LexieCat and everyone else I know says, you will feel better when you're on that road. Trust in experience that it will be so for you too.

I got one chemotherapy treatment down with three to go, but now I know what to expect with the side effects and what will work to alleviate them. Sometimes I too get a little down thinking that this just overall sucks, but then I try to think of the simple things...you know, those little things we all take for granted way too often. I'm walking, talking, breathing, and there's no reason within my controI that I won't see many more tomorrow's. And if I don't see all the tomorrow's that I want to see, then it's not for lack of hoping, trying, and giving it my all. After all, even though we don't want to admit it, we have only so much control over our life...and how long we have it. So the ultimate little thing I try to keep in perspective is that I've had every day of my life on this earth so far by the grace of something much more powerful than me. Anytime for all of us our worlds could end whether we want them to or not, so all we can really do as fallible humans is to just try to stay positive and hope for better tomorrows.  

Concentrate on what you have and not what you don't and you will find yourself a much richer person. Stay active, stay positive, and stay thankful. Help others if you can...in the end that really helps you as well. Oh, and stay in touch...☺

 

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It comes in waves out of no where. I was giving my 3 yr old a bath and it just got me thinking and worrying for him.  I can usually snap out of it fairly quickly, but I’m not against intervention if I need it. Generally I have good days with out any real bad emotions but on the “Dr” days it just makes it feel more real.  I ride my stationary bike about 4 days a week, I’m huffing and puffing but I get it done lol. And my dogs and kiddos take me on long walks and adventures in our woods so I’m pretty active, and that helps a ton!

 Lexie- I get the second thought thing! But you do have options, that seems to be a really good thing!!  I hope you will feel at ease with what you decide

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Dang girl. I'm getting anxious waiting for your treatment to start. BTW...FWIW I agree with your second opinion. Get the damn Chemo started. Maybe there is something you/we dont know, but the first line treatment is pretty basic.

As for the ups and downs...its part of the disease. One of the worst parts for me. So far the downs haven't been horrible or lasted long so I'm not depressed. Hopefully that will be true for you.

I really think you have a lot going for you. But I tell you what...I'd call my onc and tell him that it's time to get this show on the road! 

Peace

Tom

PS...I got a comfort pup (now a dog) from my family early on. It's been a life saver. Sweet as my pup is it's nothing like having a small child. Embrace that love.

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3 hours ago, Susan Cornett said:

Shella - this whole process is an emotional roller coaster. For the first four months after diagnosis, I did okay. But then I discovered my cancer had spread and I also had thyroid cancer. I started spiraling quickly so my oncologist put me on anti-depressants. Those meds put me back on the right path and kept my head in a good space when I was diagnosed with two recurrences. Meds may not be for you but please take care of your mental health. A positive attitude will be an asset.

Hang in there and keep us posted.

Susan. I saw you mentioned thyroid cancer as well as LC. My thyroid appears to be having some issues. I'm pretty much in the dark about what that means.

Anything you can tell me? Could it be a sign of a recurrence?

Thanks

Tom

PS...Sorry. Not trying to hijack your string Shella.

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Somebody told me once that none of us are given more than we can handle...if anything that makes you one incredibly strong person. You have to be strong, not just for yourself, but for those that count on you. They're looking to you for their ability to be able to handle this as well as can be expected. I know that may sound so unfair to you with all your own personal fears, but that is just one more reason to be confident and positive. And like I was saying before, be ever so thankful for every moment with those you love. None of us get any guarantees about the future. 

I want to tell you a story about my Uncle Bob. He was always quite the character; a 120 lb. 5 foot 6 inch bundle of energy that was always ready for fun with more than a funny story and a joke or two. Oh yes, he was a party guy too, always drinking and or smoking, but he worked just as hard as he played and with my aunt they had eight children. He lived hard and fast and by the time he was in his mid 70's he was diagnosed with inoperable cancer. A few short months later his family had set up a hospital bed for him in his home and then it was just a matter of waiting for the inevitable. Well, throughout I stayed close to the family, not just because they were relation, but because I really loved these people. No matter what and whenever they were always friendly to all and treated everyone special. About a week before he passed away my significant other and I went to see him. When we got there and before we went in, I asked my significant other not to say anything around my Uncle Bob that might upset him. She just sighed and exclaimed that she knew how to act around people; in other words I should shut up. So, in we went and we spent nearly an hour in small talk by my Uncle's bed with my Aunt. Now my Uncle Bob throughout the whole conversation barely said a word and for the most part looked as if he was sleeping. When it was time for us to leave I was almost in complete shock when my significant other turns to my seemingly asleep Uncle Bob and says, "Well, I suppose this is the last time we'll be seeing you...". Not a second after she does that my Uncle Bob's eyes popped wide open and he blurts straight out, "Why...where're you going?". I thought for sure you'd come and see me again...". I couldn't help but laugh as my Uncle Bob had turned something so uncomfortable into a comical moment. The more I though about it later the more I came to realize the respect and care that a dying man showed for others better off than him. He gave a gift to me in that moment that I will never forget...how to live life with dignity and a sense of humor right to the end. I can only hope that when I'm called to leave this world, I will do it with the same grace and calm.

I know the above was a long story, but it illustrates the grace and calm I wish for all who are upset, depressed, or emotionally distraught with this disease. What a gift my Uncle Bob gave me in his last days... I will never forget it and I hope you'll learn a little something from it too. Stay in the fight,be positive, and unafraid; you will do fine.

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Thanks, Shella. One more tip--stay engaged here at the forums. It really helps me to process things with other people who get it and  I don't have to put up a front for. Being here also reminds me how many of us have our ups and downs along the path, and that hitting a rough patch doesn't mean the end of the road. I've seen SO many people here go down multiple treatment paths before landing in the space that puts them in the long-term-survivor camp. 

So stick around and vent when you need to. We've got your back.

 

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Still waiting on my Pills, scheduled delivery is Thursday which I won’t get to start taking them until Friday bc UPS generally delivers late. 
 

I had an ECG as a base study for my treatment and the results were posted. Now I know we are not drs but in your experience is this anything? 

“Pericardium There is a small pericardial effusion near the right ventricle measuring largest at 0.9cm”

everything else stated as normal and I haven’t heard from my oncology Dr but I will ask him next visit if I don’t hear from him.

 

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I've never heard of a note like that associated with an ECG. An ECG is just a readout of electrical signals from your heart.

Are you sure that note isn't from a CT scan? I don't see how an ECG could identify a pericardial infusion, such less measure its size and location.

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This was the procedure/test:

ECHOCARDIOGRAM adult COMPLETE W CLR/ DOPP WAVEFORM 
Procedure Performed: A complete two-dimensional, color flow and Doppler transthoracic echocardiogram was performed

The only CT I’ve had was of my neck

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I really don't know whether it's "anything"--the good news seems to be that it's small. 

I'd shoot a note to your care team and ask someone to get back to you and explain what it means for you and your treatment. It kinda looks like there can be multiple causes of a pericardial infusion, but whether they are something to worry about in this context I'm not sure.

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5 hours ago, LexieCat said:

I really don't know whether it's "anything"--the good news seems to be that it's small. 

I'd shoot a note to your care team and ask someone to get back to you and explain what it means for you and your treatment. It kinda looks like there can be multiple causes of a pericardial infusion, but whether they are something to worry about in this context I'm not sure.

Thanks! I think I was getting it confused with pleural effusion! Either way I plan to check with the Doc to be sure.

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Sheila,

It is always so hard to be faced with this disease and all the possible outcomes we may experience.  But, for right now, you are getting ready to go to battle with this sucker of a disease and perhaps if you focus on that you can stay out of the "what if's" that can cause us so much anxiety and depression.  I realize it is not easy at all.  When I learned I had LC (the second cancer diagnosis of my life), I immediately started planning for the end and not in a positive or constructive way.  The folks in this forum along with a very confident and uplifting medical team kept me focused and ready to do better as I went through treatment (for me it turned out to be surgical only).  I always remember once hearing "you can worry about dying when I tell you that you are dying".  That really hit me.  Yes, I still had fear of the disease, death and even the treatment and what I would be like afterward.  But, everything worked out beyond anything I thought possible.  I'm still like so many here; on the lookout for recurrence or perhaps a third time with cancer somewhere else, but I now focus today and the time I am given.  While it's hard to do, you are already doing good things; caring for others, exercise, getting out in nature.  Keep moving forward, your story is not written yet.  And beside your family and friends you have all of us pulling, praying and watching for a good outcome for you.

Stay strong and keep moving forward while enjoying the "now".  

Lou

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Lou, you summed it up very nicely! Thank you for putting it at a different perspective for me. 
 

I’m on day 1 and 1/2 of my targeted therapy pills and so far so good.  I feel pretty good and positive. The drs stressed they don’t want me to loose any weight (I lost about 4 lbs in between appts) but I told them the Weight I am now is not my normal weight and I have been eating cleaner and more active and cutting out the wine which leads to snacking and overeating for me lol. They said as long as I can account for it they are good with it.  I’m keeping a journal of my food intake, activities, and side effects.

Happy Saturday!

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Hey, good to hear you sounding so good! I hope the targeted therapy works well for you and that any side effects aren't too daunting. 

I hear ya on the weight thing. Since the lockdown last year I've gained over 20 pounds. I've never had a loss of appetite and I continued to gain weight through my cancer treatment. I've managed to bring it down a few pounds over the past few weeks. The doctors are happy I've gained, rather than lost, weight but I REALLY don't wanna have to replace my entire wardrobe. Probably best that I have a few spare pounds before I start this trial, but I don't wanna put any more on!

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Sheila,

Last point on diet.  Eating clean, being active and all is great.  But, also keep an eye on calories, the doctors know that your body will need the calories to combat this disease so do what it takes to ingest enough to keep your weight at a level they consider healthy.  There is always time to "clean up" and "trim down" later.  You'll do great!  Just keep your intake up and you'll have the fuel you need.

Lou

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I'm all into eating good and getting good exercise and if that's what you're doing I would say by all means keep that up. And I'm certainly with Lou in keeping the calorie intake up. According to what I've heard, Dr.'s would rather see a patient 10 to 20 lbs. overweight when they get on in years because if they do get sick, they'll have backup in the usual case of weight loss due to the sickness. There will always be time to rethink weight or anything else later. 

While I'm not a medical professional, I would say concentrate on getting well first and foremost. That's what I'm doing. Best wishes to you in your full recovery and stay in touch...

  

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Great news! Glad you're feeling so good. 

Keep it goin'!

Incidentally, I just had MY first echocardiogram this week--in connection with a clinical trial I'm hoping to do. It reminded me of the ultrasounds I had when I was pregnant--only a lot longer, and I didn't ask for any stills to put on my refrigerator, lol.

 

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Shella....Right On! So happy it seems to be working. I'm also very glad your finally getting treatment.

Peace

Tom

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9 hours ago, LexieCat said:

Great news! Glad you're feeling so good. 

Keep it goin'!

Incidentally, I just had MY first echocardiogram this week--in connection with a clinical trial I'm hoping to do. It reminded me of the ultrasounds I had when I was pregnant--only a lot longer, and I didn't ask for any stills to put on my refrigerator, lol.

 

It shocked me too at how long it lasted!!

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