My updates (22 Years old, NSCLC)

[Judy M2]

Congratulations Ale, you deserve this after all you've been through! 

[AleHondaa]

Thanks everyone for the positive feedback I really appreciate it. @LexieCatim sorry to hear about your scans, it sounds a little confusing but hopefully they get that sucker under control. It does feel very relieving that everything is working as planned hopefully it continues so I can keep on this treatment for as long as possible. 

[Rower Michelle]

Hi Ale,  it’s been a little while, checking in to see how you are doing?

[AleHondaa]

Hello all,

It’s been a while since I’ve posted, so far I’m doing okay. Disease wise I’ve been doing good, no new symptoms and treatment seems to be doing it’s thing. I have scans coming up so hopefully they reveal good things. However, mentally wise I haven’t been doing too good. I find myself in a pretty bad depression due to a heart break, money issues and the disease itself. If y’all may recall, me and my significant other of a year and half had split up. We had gotten back together and then split again after 2 months. It’s been 2 months since then but it still torments me to this day. There’s not a day I go through that I don’t think about what could’ve been. I quit my job due to complications with my higher up and since I worked right next to my best friend.. I’ve had on going issues with money. I’ve had to rely on my parents for help and thankfully they’re there to help me with my struggles but it still takes a toll mentally. As for dealing with the disease, its still sorreal to me that I was given this. Why me? What did I do to deserve this? Why does it have to exist? These questions go through my head everyday. So far I got a new job today and things -SEEM- to be going a little better. I go to the gym everyday, 6 days a week to better myself and my form. That’s all I really have, sorry to dump this on y’all but I needed to vent a little bit on my struggles. Hope everyone is doing good and good news and fortune has come y’all way. 

[LouT]

Ale,

Sorry to hear about your troubles.  Sometimes, when we find ourselves mulling over "what might have been" with someone the reality is that we aren't pining for them but rather for our own version of what life could be.  We can mourn the loss of that one person, but time has shown that they weren't the one that could make that vision come through.  Hopefully, you can get to a point where you think more about the person that would fit in your vision and be open and aware if that person comes along.  

Regarding work; it appears that many companies are looking for people willing to work right now so you would likely not be looking for a new job long.  

And, finally, nobody deserves this disease. I don't care if you're old or young, smoked or not. Nobody, including you, deserves this disease.  But, unfortunately, we are stuck with it and need to do the best we can for our health, spirit and mind to, not only survive but also to live life well.  If you need help to get there please seek outside help.  You know you have a load of good people here that will let you vent and try to support you the best we can.

Reach out for help wherever you can.  Consider that you are presently responding well to treatment.

Lou

[LexieCat]

Hi, Ale,

Sorry to hear things feel crappy for you right now. I've been having sort of a rough time, myself, recently--the cancer IS taking a toll on me and I'm about to begin a new clinical trial. I've been worrying about who can help me if I need it. I have the world's best neighbors who do a lot for me but they spend every winter (starting Jan. 1) in Florida. I finally reached out to family and we are slowly formulating a plan. My daughter will come out in mid-December and stay with me till sometime in March, after which my cousin has said she can come out to stay with me. Though I need to stay here as long as I'm in the trial, if it stops working or makes me too sick, we are formulating a plan for me to move back to Colorado (where my whole family is)--probably in an Assisted Living thing, at least until/unless my health improves.

I'm glad you are feeling well physically. And Lou's right, none of us deserves this disease--even me (longtime smoker). Many others smoked more and never get cancer. But I do understand getting down about things. All I can suggest is to reach out for whatever help you need. I felt a huge weight lift as I talked to various people willing to help. It's hard for me to do that--I've always been very independent and self-sufficient. But almost everyone eventually needs more help than they can conjure up with their own resources. And I'm finding that people are happy to feel they are helping.

Hang in there, kiddo. Will keep my fingers crossed for good scans for you.

[AleHondaa]

Hey y’all,

Happy New Years and happy holidays to everyone here! I want to thank y’all for being a support system that I didn’t think I needed until I tried this out. My latest scans show good results as more shrinking has taken place. Doc even says that it seems my lung is regrowing new and healthy tissue. It also seems that the spots in my back or decayed or dying off. If this keeps up I’m sure to be on a road to a clean bill of health hopefully. I tend to just live day by day appreciating whatever moments I get. I hope everyone else has had good luck in fighting their own battles and if it hasn’t my prayers are out for you to get better or get good news. 

[Rower Michelle]

That is great news to start the year off! 

[AleHondaa]

Hey all!

Its been a while since I’ve posted on here and I have a lot of news to cover regarding my disease.

My latest scans indicated that there was progression on the tumor but not much very little. So the Inhertu has stopped doing it’s job. My doctor had pointed me in the direction of a clinical trial that I might’ve been eligible for. Since then I had gone through the screening process to check my eligibility. They preformed a biopsy on my lung to see if I still showed signs of the HER-2 protein on the tumor. Unfortunately today I received the news that I’m no longer expressing the HER-2 and I’m not eligible for the trial. Next course of action for me is to see at Lung Cancer specialist at Penn to see what other courses of action we can take. They mentioned oral meds and maybe chemo again which I do not want to go through. 
 

This battle has not been easy and I hate to say it but I’m starting to lose hope. I know I can’t and I have to be strong but the reality of it is really hitting right now. My life has gotten better, I’m working again, I’m working out everyday at the gym and seeing progress with my body. I even have a date with a girl I’ve been into for a very long time. It’s just very hard to be going through this and I hope that some good can come out of it. I wish everyone the best and I hope things have gone good with y’all battles as well. 
 

Ale 

[LouT]

Ale,

Keep on doing what you're doing...those are good and healthy things. Also, keep searching for new and varied trials that may offer something right up your alley.  Hang on to hope...it doesn't cost anything, is not fattening and is a great habit to have.  It will never hurt you, but can always get you through the uncertain times.  BTW, congrats on the new girl.

Lou

[Rower Michelle]

Hi Ale,

So nice to hear from you and we all share the disappointment when the treatment isn’t doing the job.  You’re smart in going to Penn, where clinical trials and experimental therapies are available. A friend of mine here has HER-2 Exon 20.  The Enhurtu worked for a bit and now she’s on her fifth line of treatment, doing the LiveStrong program with us at the local YMCA and still working. Her doctors keep coming up with new combos.  So as Lou says, hang onto your Hope.  
 

[AleHondaa]

Hey guys,

Its been a good while since I’ve posted an update so here’s the series of events I’ve been through and what news I just received today. 
 

So in March I stated that my enhertu stopped working. After that I went in for a trial but after a biopsy they deemed I wasn’t eligible. So afterwards the doctors decided to keep me on enhertu and mix radiation on top. Recently, the radiation seems like it worked on stopping the main spot from growing. About a week ago, I was admitted to the hospital for a case of pneumonia and they did scans. Unfortunately, it spread once again and truly shown that the enhertu stopped working. That’s everything that’s happened since March.

Now, the doc wants to put me back on chemo, which I’m highly against as it takes away everything I’m able to do. They mentioned on putting me on my original treatment plan which was Carboplatin, Keytruda and Pemetrexed. Except this time they’ll sub out Pemetrexed and put in Taxol instead. But today I learned there’s no beating this, only control. I’m losing hope and I need motivation to keep going.. This chemo isn’t something I want to do and I just want to go back to normal life as a young adult. However, I beat the odds of survival and that’s something that gives me a little spark but I’m just really down and I could use the motivation.

Hope everyone’s well..

[Justin1970]

Hi

you have to try and keep fighting this I know it's difficult I feel the same way as you at the moment, I've completely had enough of this journey but if you offered help then we should take it, please don't give up,all the best

Take care Justin 

[Tom Galli]

Ale,

I'm so sorry to learn of this development. In truth, I don't know much about the drug Enhertu except that is used to attack certain forms of HER2 positive lung cancer. I do have experience with taxol and it did work for me. So perhaps this new combination therapy will take hold.

About your motivation to keep going, I think most of us have that difficulty when first or second line treatments fail to harness our lung cancer. I'm not a mystic, but I do firmly believe that "hope is a good thing."

Try not to focus on survival odds. Life's end is a certain thing for us all; the only uncertainty is when. Focus instead on living in the day. Forget the past and consider the future irrelevant. Try and focus on things and activities that bring you joy; try looking for joy in the little things, then celebrate. When you make life a day-to-day event, the future becomes less important.

Know that most of us here were (are) right where you are now. I know for certain, that I only have this day. I don't know about tomorrow and don't care. But my best message of hope is certain: if I can live, so can you.

Stay the course.

Tom

[AleHondaa]

Tom,

I just read the blog you made about hope and your damn right. After this mornings terrible realization, I told my friends and family about it. Everyone was upset and scared for me, I had friends tell me they broke down crying because of what I just told them. I came to the realization that they need me as much as I need them and that I can’t lose hope or give up because of this. So I’m going to continue on this fight and I’m going to win. Out of one of my favorite movies, Han Solo once said “Never tell me the odds!” Meaning to me that they don’t matter, at all. So thank you for what you said, because I made me look at everything and realize there’s a horizon pass all this. 

[Judy M2]

Ale, I've had 6x carboplatin and taxol as the first leg of my treatment regime (along with radiation). I did not have Keytruda. For me, chemo wasn't as bad as you'd think. I did lose my hair--and eyelashes several times. If you decide to do this chemo, you may have some fatigue, but the radiation fatigue was much worse in my case. 

People have gotten great results from Keytruda. I know you've been through the wringer already. I'd encourage you to give this next treatment plan a try. 

I actually live my life like Tom suggests, one day at a time. It's really all anybody can do. 

[LilyMir]

Hi Ale, I am very new here and honestly still at times feel angry myself about my illness and have my moments of despair (I am a mom of a 6 year old whom I worry about beyond measure) but learning fast that hope is a better path.

I gathered that chemo was hard on your before (?). I had surgery (was not easy) then started adjuvant chemo. Only 2 chemo cycles so far, and the first knocked me out like nothing I have ever experienced, getting almost all the serious even life threatening side effects in one go. I felt like death and I did not want any more.  HOWEVER, I was loud and reported all my troubles, and went to ER when needed (twice), so this week my second cycle was adjusted for my own body reactions by the oncologists. They changed one of the very harsh highly toxic medications for a comparable but less toxic one, with reduced dosage, and also changed the other doublet to a lower dose. So far I feel so much better (right dose and combination seems quite important and is a trial and error I am afraid).

Work with your doctors regarding any pain/symptoms. I actually made a fuss and ensured that I am seen by the pain and symptom management team at my cancer centre, and they have been so much more helpful than my oncologists. I also will speak with nutrition soon. Keep fighting. You are so young and strong and have so much advantage due to that. New medications coming out frequently every year so let us all hope for a cure for us all in the near future. You got this!

[Izzy]

16 hours ago, Justin1970 said:

Hi

you have to try and keep fighting this I know it's difficult I feel the same way as you at the moment, I've completely had enough of this journey but if you offered help then we should take it, please don't give up,all the best

Take care Justin 

Absolutely right son xx we must never give up no matter how hard it is, where there’s life there’s hope, I know it must be really difficult but your not alone even if it feels like it, hang in there all of you we’re all fighting with you xxxxx

[AleHondaa]

Hi guys,

Well tomorrow is my first day on the treatment, I’m very nervous and anxious. I really don’t want to be on it, mainly from how sick I’ll feel and losing my hair. My biggest thing is I don’t want to look sick, right now if you see me you wouldn’t expect me to have what I have. I don’t know what to expect out of this and I’m kinda scared. Could I get any tips of being on these drugs and things to do Improve quality of life? Im hopeful it will do the job and work but I’m very scared at the same time. Doc mentioned it would be just 3 months and then I’d be just on keytruda but I feel like these 3 months are gonna be long. If any has suggestions or advice, please share.

Thank you,

Ale

[LouT]

Ale,

You'll be getting input from those with the right experience soon, but I just want to tell you to stay as strong as you can.  One thing a lot of folks here have recommended when doing chemotherapy of many kinds is "palliative care" they could add a member to your medical team who monitors all your symptoms and does their best to minimize them for you.  The goal is to get you through the treatment as comfortably as possible.  Please check into it.

Lou

 

[LilyMir]

You got this Ale! Hair will come back. They told me mine won't fall but it is falling by the droves and at times I start crying in the shower then I remember that this just  means the chemo is working and killing cancer cells. I even started finding amusing facts such as the pesky grey hairs that started to grow during the pandemic years are way overrepresented in those hairs that do fall and my hair is now darker  

Please seek pain and symptom management care as I mentioned earlier. We can share what worked for us based on your complains and you can ask your doctors about them if that helps.

I am off to my infusion in a couple of hours and my stress is so high (woke up super energetic and made breakfast for my family then crashed and feel so tired now, go figure!), so you are not alone in this tough journey.

BTW, I fought for extra hydration after my terrible first cycle: before, during and after infusion. It makes a lot of difference.  Akynzeo and Dexa stops any nausea for me in early infusion days. Rescue nausea meds are helpful if needed rest of the week. Tramadol works for pain. If I only can sleep better though!

Keep us posted!

[Justin1970]

Hi ale

Goodluck tomorrow and stay strong it's worth fighting and you certainly aren't alone, we are all 100% with you

all the best Justin 

[Karen_L]

FWIW, I’m a carbo-taxol grrrl and never lost any hair. Like the good patient I (sometimes) try to be, I filled Rx for a drawerful of anti-nausea meds. Nurses told me the order in which to use them, and they said to absolutely take them at the first sign of discomfort. So I did. I wish you much luck. 

[AleHondaa]

Last time I started enhertu, I was told I was going to lose my hair but it fell but didn’t go away. So that may happen again I hope, I don’t want to look sick/baby face. 

[AleHondaa]

So quick update after my first infusion yesterday, after being poked and chemo’d up I felt fine most of the day. I’m assuming it’s because of the steroids. However, today I do feel sluggish and nauseous after waking up. About how long can I expect this to go on and does it get worse through out the week? I am going to “medicate” if you know what I mean hahaha as it always helps with my nausea. Thanks again to everyone for y’all help and input for everything.