Blessed!

[ndfuller]

Yesterday marked the 6 month mark of diagnosis with Stage IV NSCLC...I figured I have beat one of the statistics, median survival of 6 months. PET/CT this past Monday showing marked progression in the lymph nodes...so just asking for prayers...I beat ONE milestone, determined to bet more! THANKS!!!!

[scifiknitter Blogger]

Ndfuller,

Here's hoping that your team comes up with a good plan for that lymph node. Congratulations on making it so far, and best hopes that you keep on keeping on.

Hugs, Anita

[imina]

Prayers going out to you. God got you this far and he will get you through the next challenge

[Ruthie1950]

Praying for a good outcome. May God strengthen you and give you His peace that passes understanding.

[kimbad]

Nice!! Keep going and try to keep your attitude positive!

[Denzie Moderator Volunteer]

May you enjoy many more milestones. Are they talking about radiation or other precision medicine?

[ndfuller in reply to Denzie]

Not yet....see my oncologist this week. Hoping he will give me other options!

[Enjoyabull]

I have stage lV NSCLC with progession in lymph nodes. Are you having any problems directly related to Lymphs? I have lost my voice and cannot lie on my back without Oxygen. Hoping this new chemo shrinks them....I asked about radiation my Dr. said no, what treatment are you getting?

[ndfuller]

Thank you for your reply. Sounds like we are having similar problems. I have been on Alimta (had 4 treatments of Alimta and Carboplatin) and when first scan showed decrease in tumor size in lungs and lymph they changed to just Alimta.I think I have had a total of 9 treatments starting in July. My biopsy at diagnosis showed no markers and there was not enough tissue to do the PDL-1 determination. I haven't seen my dr. since scan results (will this week). I know he wants to do another biopsy. I have been very short of breath with exertion the past 3 weeks (really first time had that since diagnosis). Scan show that the lung tumor continues to decrease in size with no new ones noted. It is just the lymph system now that is not cooperating, showing up in abdomen, neck, chest and pelvis. What is your new chemo? How long since your diagnosis? My oncologist hasn't given any other options prior to this scan. I had a second opinion that gave me hope that if the Alimta quit working a biopsy may reveal that I am able to have some sort of immunotherapy?! (fingers crossed). I pray that your new chemo works. I really do thank you for replying and hope that we can keep in touch and maybe boost each other to fight, fight, fight!!!!!!!

[Enjoyabull in reply to ndfuller]

I was on carboplatin and avastin in the begining like you and had the same problem! My Lymph showed progression . Then I went on Opdivo and it didnt work for me. I just had my scans read today and there is no progression! Things seem to either be stable or smaller. This new chemo is working! I also found out having oxygen at some stage in this journey does not mean you will always need it! I am happy to hear that because the portable oxygen tank really isnt fun to lug around. I am now on a drug called Taxotere . I lost most of my hair, its really hard to look in the mirror. Especially since I lost so much weight to. I made a conscious decision though to make a fattening shake once a day to help put some weight back on!

What do you do during the day? How do you feel? Are you in pain?

[ndfuller in reply to Enjoyabull]

I am sooooo glad to hear your good news!!!!!! WONDERFUL WONDERFUL WONDERFUL!!!! If you don't mind me being soooo nosey, what is current chemo? I had my appointment today and now will go to a surgeon to arrange a biopsy of tumor in my neck (lymph node). Dr. is checking for PDL-1 for opdivo. If not...will go back on the Carboplatin with Alimta most likely. This cancer journey certainly teaches you (or tries to) be patient with knowing doesn't it? I do not have any pain. Have been experiencing less stamina and SOB the last 6 weeks but that has been the worst of my symptoms. I was on oxygen about a month after diagnosis but haven't needed it since, so I agree about not always needing. Hoping not to have to use it again, but thankful it is there, if in case! I returned to work in December and am trying to do almost full time, but that may be in part why my stamina and SOB has increased. Trying to learn how to navigate all this. I started out with really thick hair and every day I lose all these handfuls of it, but so far....I still have enough to cover my scalp! (now mind you I have only been doing this since July of 2016, so not too far into the hair loss. Thank you for sharing your story, I truly appreciate it!

[Enjoyabull in reply to ndfuller]

I am on taxotere.

[Enjoyabull in reply to ndfuller]

Thank you for your reply. It feels good to finally have my cancer responding to something! You have it in your lymph nodes ? what stage are you? I am so jealous you are going back to work. I am basically just able to watch tv all day. I also lost my voice! So frustrating not to be able to talk to family and friends.

[ndfuller]

Oh....I am sorry that you are unable to do more and I can't imagine losing your voice. Do they give hope that you might regain that? I have noticed just in the last week that I am getting hoarseness. I figure it is because of the enlarged lymph nodes in my neck. When I was diagnosed there was just one place that the cancer was in the neck. But it had invaded the outside lining of my heart. They drained that in July. But last scan it has spread to the lymph in my chest, pelvis and abdomen. I am stage IV. I am finding that last few weeks work has been hard...but maybe if they get this under control I will be able to continue. Rooting for you that this response to treatment will lead to you being able to gain some of the things you have lost!!!!!!!!!!!!!!! And I hope soon!!!!