New and scared

[Jenah]

For months, docs were treating what they thought was a lung infection. May 17 of this year, I had a left lower lobectomy. May 30 I was told stage 2a andenocarcinoma. Later it was upgraded to 3a, with the KRAS mutation.

I did one round of chemo and my kidneys started to go nuts. I can’t do any more chemo. I’m inbetween my planning scan and start of radiation.

Never a smoker. 40 years old. And my daughter is only 10.

I’m scared out of my mind.

Any help and positives would help.

Hoping for very few spelling errors as I am sobbing while writing this.

[BridgetO]

Hi Jenah,

I'm sorry to hear about your diagnosis. Hang in there. On these forums are a lot of people with stage 3 and 4 lung cancer who are  not only surviving but living well. This is a good place to find support, informantion and hope. Let us know if you have questions and how we can best support you.

Bridget O

[Roz]

Hi Jenah,

I would be happy to answer any questions that you might have. I'm sorry to hear about your diagnosis.  I was diagnosed stage IV mucinous adenocarcinoma with the KRAS mutation summer of 2017. I had my lower left lobe removed (VATS) in Sept 17, and my upper right lobe removed (thoracotomy) in Oct 17. I had chemo after. 

I was 60 when diagnosed and have always maintained a healthy lifestyle.  My best advice for you is to continue to stay positive, and believe that you will be "NED" soon. If you have any questions, do not hesitate to ask. 

Take care,

Ro

[LexieCat]

Welcome, Jenah,

I don't blame you for feeling scared.  Cancer--especially lung cancer--is scary.  And having a young child does add to the worries.  But as the others here have noted, there are a lot of options for attacking this thing, and we have a lot of long-term survivors here.  

Glad you found us--we have a great group of folks to support you through this.

[Tom Galli]

Jenah,

Welcome here.  Sorry about the trouble with chemo.  It happens but the advances in precision radiation have made curative treatment using this techniques very probable (here is some information on radiation used to treat lung cancer).  A form of precision radiation called SBRT or CyberKnife likely resulted in my no evidence of disease diagnosis and this was after 18 infusions of Taxol and Carboplatin, 3 major surgeries, and 4 failed stent insertions.  

I know well how scary cancer can be. I've been there and experienced fear and uncertainty. While I don't have any remedies for fear or anxiety,  here are some suggestions for gearing up for your battle.  I was diagnosed in 2003 and had 4 recurrences after treatments that produced no evidence of disease.  I mention that because if I can live, so can you.

Questions?  This is the place.

Stay the course.

Tom

[Susan Cornett]

Hi, Jenah.  I'm sorry to hear about your diagnosis but am glad you found us.  We all understand where you are right now, and we know it stinks.  So much gets thrown at you so quickly, but all you hear is "cancer".  I'm stage IV and I'm 2.5 years into this battle.  But there are lots of people here who are long term survivors.  They give me hope every day, and they can do the same for you.

Please keep us posted and let us know if you have any questions.  We want to help.

[Jenah]

Thank you. I have good days where I feel like I can and will conquer this. Then I have days like when I posted this...and had been making the mistake of googling.

I have a start date to radiation: Thurs, August 23. If it only goes 28 treatments, the last is 4 days before my nephew’s wedding, 3+ hours away. How am I going to do this?

 

[LexieCat]

First of all, see how you feel.  People respond to treatments in different ways.  If it's really wiping you out by that time, then you will have to consider various options, which might include finding someone to drive you, staying overnight so you don't have to travel both ways the same day, staying only for the ceremony (and having someplace you can go afterward for a nap if you need to), or sending your regrets--your family will understand.  The point is, you don't know yet how you will feel, so it's a good idea to think of various options for Plan A, Plan B, etc., but you can't know for sure how you will feel until it gets closer to that point.  Some people say radiation is harder as it goes on, but not everyone feels it to the same extent.

I do think it's important to cut yourself a break while you're in active treatment.  Hopefully any restrictions on your activities will be temporary--the treatment will be effective and you will be feeling better.  

[Robert Macaulay]

You should be fine after the radiation is completed. Good way to find out is the the two day break after being given five days of radiation. Good indicator of any side effects if any.

[DrBee]

Hi Jenah and welcome to this very supportive, inspiring and wise club - of which no one wants to be a part. I am also new; my husband (49, never smoker) was diagnosed stage iv NSCLC adenocarcinoma at the end of July (3 days before our first wedding anniversary, incidentally). This forum - both being able to vent here, and the amazing and inspiring survivors, including very longterm ones - are probably the only reason I got to sleep some of those first nights when I couldn't stop crying, my hubby couldn't stop coughing, and we didn't even know how we'd make it to the first chemo session.

We found out 4 days later he is ALK+, so I shifted more of my online interaction to the ALK Positive FB group, but I keep coming back here to check in with folks and because so much of the wisdom here is applicable across a broad range of types/stages of LC. 

I am sure you are googling KRAS like crazy, so don't need me to tell you this or send you this link, but there are really exciting things happening right now with the development of KRAS-specific targetted therapies (see for instance https://directorsblog.nih.gov/2018/02/13/kras-targeted-cancer-strategy-shows-early-promise/) So you may have more options, soon. Hopefully radiation will take care of this for now, and then if and when you need them, those KRAS specific drugs will mean whole different treatment options - and prognosis - for you. 

I am so glad you found us. Please keep us posted and know we all are holding you in our thoughts. You can do this! 

[ColleenRae]

Hello Jenah,

I, too, am new to this forum and lung cancer.  I am not as wise or helpful (yet!) to anyone on this site but can say you've found the right place.  I found this site and it has been a blessing for me. Some very caring, kind, intelligent and wise individuals.  I hope you will benefit from all that they say!

I have a "temporary" dx of NSCLC 1a. I'm being encouraged to obtain a RUL lobectomy. The tumor can't be biopsied due to the size and location. It's apparently slow growing, so I am taking some chances right now to research and get 2nd and 3rd opinions as to what course I will take.  I have to be willing to have the lobectomy even if they find out the tumor is not cancer (there is some debate over this now between providers).

I got my "diagnosis" on July 18th, so I am getting frustrated over the length of time that is passing and I don't know much more about what I might be facing.  I, too, have cried a lot.  I still do. Mostly during the night and early mornings.  I have one child, a 20 y.o. son who lives with me.  He is on the Autism spectrum. High functioning. He is going to postpone his college studies (he's a sophomore) if I have surgery as he wants to take care of me... The hardest thing I've ever had to accept or go through. Not sure I'm really accepting it - I still want to be told this was all a mistake, the tumor is gone, this is a bad dream, etc.  Denial is not helpful! 

Hang in there. I think you'll find a lot of love and support here - and a wealth of good information.

Colleen

[Kleo]

Hi Jenah,

I just finished 6 weeks of VMAT radiation last week. My doc had told me it'd probably get pretty tough about the 3rd week in and to have someone scheduled to help. Had my cousin fly in from San Fran for the last week, just in case. Everyone is different, some have trouble and some have little to no problems. Depends on location and dosage and just personal health I think. I ended up having very minor discomfort and spent that last week running around at the beach with my cousin like a tourist.. instead of her nursing me! So you may be fine for the wedding....you won't know really until it's closer to that time. It's hard to predict! 

 I know it's scary stuff but man that radiation does do it's thing.

I had to stop Googling too! Freaked me out wayyy too much. 

Hoping all goes well and keep us posted!

[LaurenH]

Hi, Jenah,

We're thinking of you today. Please let us know how you're doing. I'm happy to see that you've connected with several of our members. This community is an invaluable source of information and support. I am also happy to provide you with information about LUNGevity's additional support resources if you'd like. Just know that we are here for you!

With gratitude,

Lauren
--
Digital Community Manager
LUNGevity Foundation