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Rhonda 58

Newly Diagnosed Adenocarcinoma

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Thank you Tom,

I sat outside on Friday for about 10 minutes because it was so nice and just wanted to feel the sun. Before I came back in I had already lost my voice, I just thought it was post op, now I know to watch out. I have a very good soft face mask with filter I had already planned to use when I can get out and start walking but will now use it anytime I am going to be outside.

Thank you!!!

Rhonda

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Rhonda... Will you be able to visit the Lungevity thing? It says Embassy Suites DFW, but it's really not at the airport. In fact, if anyone wants to stay with me and save on hotel rates, you are welcome. I have 2 other bedrooms and lots of couches. Let me know.

This is not in airport proper. It is on 183.

Sent from my iPad using Tapatalk

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Hi Barb,

I'm not sure if I will be up for it, still having a lot of pain in my back shoulder blade area, feels like pluresy. I only slept two hrs last night because I can't find a position to relieve the pain. I'm better during the day when I am sitting up so going to try sleeping in the recliner tonight.

Thank you so much for your generous offer, I live in Justin and will be coming with husband so we will just drive there and back.

The back seems to be the worst of this but I just can't past it yet, using a heating pad, taking my meds. I'll just have to see how the rest of the week goes Barb, I sure need some sleep.

Take care,

Rhonda

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Please do get some rest. I remember most of my pain was where the chest tubes were. Ugh! I totally understand. I don't think I would have been able to do a whole day just 2 weeks after surgery either. You take care of Rhonda!

Barb

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Hi Barb,

Yes, this being Thu I just don't think I will make the summit :( Sat will be 11 days post op and although I am recovering, it is slow going. I am still just working on my building up my walking inside for now, trying to get more stamina for a real walk outside. Don't think I'm even ready for a walk around the W...... store yet. I'm disappointed I won't make the summit this year, I do want to say I am so thankful I found this site and for all your support and encouragement. It was all of you that saw me through my fears, calmed me when I needed it and answered all my way too many questions.

I know my journey with LC is not over and will always be in the background of my future but just knowing that I now have what I consider to be my extended family with my Lungevity friends will make the journey so much easier.

Have a wonderful time at the summit and consider yourself hugged Barb since I won't be there to give you one in person.

Blessings,

Rhonda

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​YAY!! Welcome home!! Sorry you are having a rough time. I am actually still dealing with pain management 4.5 years later. I left that part out of my previous posts mostly because I had hoped VATS would be far less painful and because it sounded like my surgery would be terribly painful from day one because of all the bones being busted up and removed. I do hope sleeping in the chair works for now and you can soon return to "normal" in sleep and everything else.

 

​Too bad about the summit!! I have been to the one in DC a couple of times and hope to go again this Spring. It is a Wonderful time!! To be surrounded by people who GET IT! You are now part of a club. Only certain people get into the club, none by choice, but there is a camaraderie that can't be taught. It happens when you see someone facing what you faced and you know how it feels and you want to make it easier because you know it will never be easy.   

 

​Mark your calendar now for next year!!

 

 wo​Take care and let us kn

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​That was supposed to say:

 

Take care and let us know when you are officially NED!!

 

This site hates me! It won't post, my typing suddenly starts going in backwards. The word KNOW is there - the O and W were typed in the correct order, but after the cursor jumps to the left side of the line I was typing, the letters start going in right to left!! I swear!! I have showed my hubby when it's happening!! It is only in this site!

 

ARG!! Oh well, if this is the worst thing that happens to me, life is GOOD!

 

​Mary

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Hi Mary,

Whoa!! I can't even imagine ribs being broken and removed and the post pain from something like that. I'm sorry to hear this still affects you 4.5 yrs later.

My pain seems to be related to the lower lobe wedge resection, severe pain starting late in evening and lasts all night long waking me every two hrs because of pain. Nerves maybe??? I have minimal pain from the upper lobectomy.

Since my pain level is not severe during the day I started on Aleeve today and will use prescription meds at night, this is what my PA suggested the cut down on the amount of Tylenol I have been taking daily.

I got the final report yesterday and it did not change, all lymphs were negative for cancer and the nodule removed from lower lobe was benign (infectious infiltrate). The doctor feels all cancer was removed with upper lobectomy and I need no follow up treatment, just follow up scans. So for right now, I am NED, YAY!!!!!

Hope you are doing well Mary!!!!!

Blessings,

Rhonda

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Hi everybody,

Just a update to say I'm doing well, first day off narcotics, Yay!!! I started Neurontin yesterday for the nerve pain so just taking that now with Aleve, so far so good, pain, yes, but tolerable.

I saw my Pulmonary Dr yesterday, lung sounds good, breathing is good, he told me I needed to follow up with my oncologist because the surgeon will tell you since he got the cancer out you are cured. My pulmonary Dr said he has seen his share of people that believe that and have more cancer pop up because microscopic cancer cells were left behind or had gotten into the bloodstream. I definitely agree with him and had planned to see oncologist anyway for that "dusting" chemo.

Have my appt on the 21st for blood work and office visit.

Hope everyone is doing well, will update as I go along.

Thank you all so much for your support!!

Rhonda

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Rhonda,

 

Your pulmonary guy gave good advice.  I'd let the medical oncologist make the call on the need for dust-up chemo.  Go to a surgeon, you get surgery for a solution.  Go to an oncologist, you get a solution for your cancer.

 

Glad your narcotic meds are complete.  Watch your pollen exposure levels.  My breathing after being outdoors is labored indeed.  My spring challenge is in full bloom.

 

Stay the course.

 

Tom

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Hi Tom,

Yes, you are right, I had severe allergies moving to Texas from Illinois last July. I am not taking any chances and anytime I am going to be outside I will be wearing one of my face masks, they are lightweight, have disposable filters inside, hoping this will be enough. I sure need the walking for exercise to keep that one and a quarter lung working well.

I'm sorry you are having these ongoing issues and I know you are also taking precautions when outside.

I remembered what you said about the fact of one microscopic cancer cell being left behind. After the ordeal of the surgery I want to do everything possible and available to not to let this start growing again.

Take care of yourself this spring!!!

Rhonda

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Hi everyone,

I saw my oncologist today and this is what he said. I am cancer free right now. He said that they don't do low dose follow up chemo. My 5 yr survival rate is 65%, so 35% chance of recurrence. He said I could do a round of 4 infusions, 3 weeks apart with full dose cocktail of Carboplatin/Paclitaxel. He said my benefit of doing this would only increase my survival rate by 7%. He said if the cancer comes back within the next five yrs it is considered incurable, either way, whether I take the chemo or not. He said I had a lot of positives and told me I only had two negatives 1) my cells were poorly differentiated, 2) my tumor was actually touching the visceral pleura (even though they had all clear margins). Probably explains why I'm having so much post op rib pain, the surgeon cut and removed a lot of pleura off my chest wall and my back wall. So guys there it is, he wants me to call him by the end of the week and let him know what I want to do. I think for me I am not going to do the chemo for a 7% benefit. I've been through enough, hard to breathe now, no stamina at all and my Fibromyalgia and chronic fatigue is at its worst. I will pray and know that God knows my future and what it holds.

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Hi Rhonda,

Sorry I haven't been on for a while. We had our grandson come stay for a weekend for the first time. This is something that we have tried to arrange 3 times since 1/22, his momma's birthday weekend. He seems to always have a cold or some kind of bug that I obviously don't want. He came that last weekend in Feb. because his mom was sure he was no longer contagious. she knew no such thing! My hubby and I both ended up with bronchitis that took a good 2 weeks to kick our butts start to finish! I have been trying to catch up on everything and not push myself the past several days. I just know I am glad that I keep my freezers & pantry well stocked!! I didn't have to get to the store until last Thurs. or Fri. for bread and milk! LOL!

 

I am SO HAPPY that you are NED!! I also agree with your choice about the chemo, if I were in your shoes. I was told the same thing about being incurable if it comes back. I think the medical oncologist may have told me that at our initial meeting. I just don't think 7% over 5 years is all that worthwhile compared to facing full blast chemo for 3 months or so. While I had a remarkably easy time with chemo, most people find it to be quite the unfavorable and daunting thing to get thru. Make sure you keep up with your scans so that IF it does come back, you find it ASAP! I was hoping your fibro and chronic fatigue would see that you whooped cancer's behind and run for the hills, but I guess that only works in dreams. Sorry!!

 

Take care,

Mary

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Hi Mary,

Glad to hear you recovered from bronchitis and enjoyed you precious grandson, nothing like them!!!

Yes, I did a lot of researching and there really isn't a lot of significant benefit for Stage IB to get adjuvant chemo. Just turned it over to the Lord and if it comes back, which LC kinda has a tendency to do will just assess it then.

So glad you are doing well Mary!!!

God Bless You!

Rhonda

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Thanks Rhonda,

I Had chemo before the surgery, along with radiation at the same time. I have seen it done all three ways... actually four maybe more than I could count if I tried 0_o

Chemo & Rad before Surgery

Chemo & Rad after surgery

Surgery only

Chemo Only

I know that I was told a few things about why I was doing things the way they were done. The chemo & rad were to shrink the tumor and chemo went first because it helped the rad work better. THAT part threw me for a loop. I was doing 2 kinds of chemo. The 1 I did Monday thru Friday was a small bag and only took around 2-2.5 hours. On Monday and Friday I had that 1 plus the 2nd 1, 1 at a time. The second 1 took around 6 hours. While my Tues, Weds & Thurs rad appointments were for noon and I was never late, the Mon  & Fri appts were made for 4:30 and I was never on time for those! One day I asked if I could just swap things ~ do my M&F rads at 9 am and then have chemo right after. My 7 zaps only took about 20 minutes, so it just made more sense to me so I could be on time for both teams every day. That was when I learned from the tech that doing chemo first helped the rad work better... or was it the other way around? The Rad would work better if the chemo had already been done. I am pretty sure I was right the first time. As long as the Docs & Techs know, I don't have to, right?! Hehehee.  

At any rate, I trust that when the Docs plan my treatment plan, they know what they are doing, in the right order, for the right results!

Now that I think about it, I wonder if in some of the Stage I and Stage II cases, they actually decide on post-op chemo during the surgery. I mean, if they see that there is NO way that even the tiniest speck could be left behind, then no dust--up rounds. If it was too close to something, then add dust-up just in case. I doubt that is how they decide all the time, but if it looks better or worse than it did on the images, it sounds possible.

Now I am just babbling :-) Sorry about that.

 

Somehow my computer played with me in a whole new way today!! I had left this page open since the last time I wrote. I refreshed the page, saw your note to me, began this answer and all was going OK until I was well into that first paragraph. At that point, my curser vanished. In the past, when it vanished, it showed up ~ typing right to left ~ somewhere in the typing I did above. I couldn't  find it, so I hit my backspace key. IT TOOK ME BACK alright!! Back to the page I left it on the other day when I finished typing to you!!

  

I hope that the "View auto saved content" works for me again when I hit "Post" like it did after I was brought back to this wrong page from the other day.

 

Be well,

Mary 

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Now that I am back on the right page, I can see (remember) all that you wrote. So yes, I agree with you putting things you can not change into the Lord's hands. I do it too. I also think most of us are afraid it will come back. I can tell you my buddy who had the same type and size tumor as me as well as a node (I had no nodes) is still kicking lc azz and he is NINE years ahead of me!! 13.5 years NED!!! He was Stage IIIA

 

Keep THAT in mind!!

Mary

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