Rhonda 58

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

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.

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

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

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

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

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

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

Thank you Barb!! I am recovering very well, my breathing is better now than before surgery, room air Sat 96/97. I had to call about my pain management this morning though because they just sent me home with Tramadol and I am having severe pain under ly shoulder blade, the other pain is not severe. The PA told me my lower lobe was really adhered to the back wall and they had to cut a lot of pluera tissue away to get the lung to release so now I know why severe pain. She adjusted my meds and I am now more comfortable. She reminded me that the pathology report from surgery was a preliminary report and they are expecting the final report within a few days. Take care Barb,

Thank you Donna, I am doing pretty well today. I was able to take a shower and wash my hair, boy, that was exhausting but sure feel better since I did it. My breathing is pretty good, I have a nebulizer at home now since I had the pneumothorax so able to use it as needed every 4 hrs. I used it once today but going to try to not depend on it. The more I'm able to walk around and do my breathing exercises the better my breathing is. I have 5 incisions including the one one my neck and when my husband removed the dressings he said they all look good. I had a low grade temp this am but that's expected and its normal now since I took my Tylenol. Feeling blessed!!!

Thank you Tom!! I didn't know they were going to scope me either, found that out when the doctor came to talk to me in the surgery holding room?? He said he was going to do that first, if any of the lymphs in the mediastinal area were positive, he was not going forward with the lobectomy. Guess he felt my treatment plan would have been different at that stage. I thought it a little weird to not know that until I was prepped for surgery but it all worked out, the best outcome I could have had under the circumstances. Blessings for your continued health!! Rhonda

Thank you Tom!! I didn't know they were going to scope me either, found that out when the doctor came to talk to me in the surgery holding room?? He said he was going to do that first, if any of the lymphs in the mediastinal area were positive, he was not going forward with the lobectomy. Guess he felt my treatment plan would have been different at that stage. I thought it a little weird to not know that until I was prepped for surgery but it all worked out, the best outcome I could have had under the circumstances. Blessings for your continued health!! Rhonda

Hi Everybody, I made it and am back home today. So here is how it went. When I first got there the doctor told me me they were going to anesthetize me the first do a CME, where they make a incision in your neck and scope to biopsy my mediastinal lymph nodes. If they had been positive for cancer that was as far as they would go, no lobectomy. When I woke up my family relayed to me what the doctor said. All lymph nodes were negative. He did a complete upper lobectomy. He also did a lower wedge resection because the PET showed a suspicious nodule, it was benign, so no cancer there either. The 3.6cm cancer was removed in the upper lobe. He told my family that I will not need follow up chemo because they got all the margins. Just going to be honest, I had a really bad day yesterday. They did not give me a morphine drip so I was taking Norco by mouth and Toradol by IV, in a lot of pain (to be expected) I had a reverse reaction to the narcotics, I was very wired and had been awake for 40 hrs, it was only late last night that I could get 4 hrs sleep sitting up (after asking for Xanax) this morning I refused more narcotics and went to Tylenol. Yesterday I was throwing everything up, even water, they thought I had a Ileus, did a stomach xray, didn't get the report but it resolved overnight and today ok. Still having a lot of reflux figure it is from the scope, got lots of Halls lemon cough drops for throat. They sent me home with Tramadol which I will tolerate better. Doesn't get rid of the pain but after major surgery nothing but time will help. They removed my chest tube yesterday and no it sure wasn't pleasant but afterward felt much better. I feel pretty good considering, the worst pain is my neck, chest, where they scoped me. They also told me they had to use a larger intubation tube for my procedure so I'm sure that is also why it's pretty painful. Before I had my surgery my oxygen levels were 97/98 during the day without oxygen, today they are 95/96 without oxygen so all my worries about being on oxygen 24/7 because of getting the lobectomy with COPD were unfounded. I want to thank you all for your prayers, support and encouragement. I will do everything they told me to post op so hopefully will heal quickly. Blessings to you all!!! Rhonda

Barb, I love your humor!!! I try to keep mine too, it helps the family cope better, especially my 38 yr old son who was just devastated. My dad died @ 65 with LC and my mom @ 59 with LC, so that has been the only experience my son has had and all he could see was losing his mom. No, it don't sound like you breezed through your surgery at all, OUCH!! I am so thankful you were a candidate like me for surgery, so many are not able to have surgery, also that your surgery was a cure for you, what a blessing!!! I am also very blessed in mine being found early. I am sure going to take your advice about texting while on those heavy drugs Mine is upper left lobectomy and I'm left handed so thinking I might not be too comfortable texting for at least for a couple of days. Thank you for your encouragement Barb!!! Will update as soon as I'm able. Blessings, Rhonda

Thank you Barb for the prayers, I am starting to feel the anxiety. I will be at Medical City Hospital, Dallas, Mitchell Magee is my surgeon. He said VATS so I guess that is what it will be. Yes, I hope to still be able to attend, I'm really looking forward to it. I know everyone is different, some breeze through surgery and some have unforseen complications. I am going to just be positive and pray for a good outcome. I think my biggest fear is what he may find in the lymph nodes as my stage will change at that point. One day at a time, one minute at a time. Take care Barb, God bless you, Rhonda

Great post Cindy!! When things get to be too much I can listen to my iPod and instantly feel lifted!!

Hi Tom, Oh wow, thank you!! I will certainly be aware of that short count Funny how our minds let us forget things after awhile. When I had the core biopsy, the nurse kept saying, "she's not even flinching", what they didn't know is that my toes were curled under so tight I am surprised I didn't break a couple. Guess I knew the ramifications of moving during a biopsy. I appreciate your support Tom very much, you have helped me in so many ways, more than you realize!! Blessings to you, Rhonda

Hi Fannymae, Welcome to this site, I'm glad you found it as we all did at one time. Please just start looking around this site and read as many post as you can. Everyone here will welcome any of your questions and can help calm your fears. There are so many great survivor stories from people that were diagnosed at a late Stage of LC but are still here giving us all hope. When they see your post they will reach out to you. I am newly diagnosed myself so I'm not going to even pretend I have any answers at all, I am trying to learn everything I can about my LC. It sounds like you did well with your surgery and I'm happy to hear that. I too have been told I will need follow up chemo after my surgery and was told by a wise man here they call it "dusting" or "sweeping" to be sure there are no cancer cells floating around left behind. I'm sorry you are not getting the support you need from your family and I will keep you in my prayers. My oncologist gave me very low dose anti anxiety medicine for my panic attacks, please talk to your doctor if you are having trouble coping. I don't need it everyday but have it only for panic attacks. You are not alone in this fight against LC and I am so happy we both found this website. Post as often as you want to, ask as many questions as you need to, someone will help you. Blessings to you, Rhonda

Hi Vicki, I'm so glad you found this site like I did, everyone is so helpful and knowledgeable about all stages of LC. I'm so sorry to hear you are a very young mother but fighting this your youth will certainly be in your favor. You already got over the biggest hurdle and its that you are going to FIGHT this. Will surgery be a possibility for you after your chemo? I'm sure you know this but if you want to send a private message to any member you can click on their name and you will see a link for message. I wanted a personal opinion from a member so I opted for a private message. Are you able to attend the Hope Summit in Dallas at the end of the month?? I am registered and sure hope for a fast recovery so I can still attend. I am looking forward to meeting a lot of people, there will be so much information for us there. I am going to be praying for you Vicki, just know that even when we can't see it the Lord is always working in our lives. Blessings, Rhonda

Thank you Mary, I welcome any and all prayers. When I got diagnosed I just turned it all over to the Lord as this is not in my control. I still have my roller coaster of emotions but as long as I know He is running the show I also have my peace of mind. Just one step at a time.

Hi everybody, Got my call, surgery is scheduled for next Tue, the 16th. VATS left upper lobectomy with several lymphs. Scared but sure is better than the alternative!!! Will post again after surgery.

Thank you Mary, I am sorry you had to go through all that but very happy to hear you are NED now. I will definitely keep posting updates, as of right now I am still waiting to hear from the surgeon, I beat my actual films there that were being mailed from Denton to Dallas, Tx. He made his decision for surgery based on my radiology reports and PFT. He will make his final decision after looking at all my images then call me, hopefully today. Blessings, Rhonda

Thank you Donna, Yes, if everything goes according to plan I sure hope so and I certainly will update as I go along.

Hi everyone, I got great news today at the Cardio Thoracic surgeons office, he looked at everything and thinks I will be a good candidate for the VATS lobectomy. I will get some pre surgery labs and EKG and should have surgery in 1 to 1 1/2 weeks.He will take some lymphs, do a frozen during surgery and may decide to take more lymphs. He said my hospital stay should only be two days, maybe even one day, depends on when I get chest tube removed. I am very happy about this vs radiation and chemo only as he says by taking the lobe it will get all the cancer. I was worried my Pulmonary Function Test I had done last Monday would prevent me from having the surgery as it shows severe COPD but during the day my oxygen levels are at 97/98 without oxygen and he does not think that would change much with lobectomy. Feeling very blessed!!!! Rhonda