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Living with lung cancer - Introduce yourself & come say hi
Welcome to the Lung Cancer group on Mayo Clinic Connect.
This is a welcoming, safe place where you can meet people living with lung cancer or caring for someone with lung cancer. Let's learn from each other and share stories about living well with cancer, coping with the challenges and offering tips.
I'm Colleen, and I'm the moderator of this group, and Community Director of Connect. Chances are you'll to be greeted by volunteer patient Mentors and fellow members when you post to this group. Learn more about Moderators and Mentors on Connect.
We look forward to welcoming you and introducing you to other members. Feel free to browse the topics or start a new one.
Let's chat. Why not start by introducing yourself?
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@colleenyoung If they aren't worried, I am not concerned more than usual. Really, I am blessed to have my PCP care as she does. Really appreciate her and the team she has assembled. Had she not pushed me into having various tests, the cancer would never have been discovered as early as it was. I will get on with a good weekend and enjoy each day as it comes.
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3 ReactionsUpdate - Hopefully winter is behind us but Easter is not passed as yet here in Indiana it can snow up a storm on that day.... - to be 56-70's today.
I am head to Indy with friend in about 2 hours - he had ct-scan on Thursday at Indy and this is to be his dr/chemo/immunology - not sure what is going to be going down - got e-mail of tentative results and it said the Game plan has again changed after only 6 weeks -
On Feb. 25 they add chemo back - Docetaxel but it must not be working as they had hoped..
He has had no bad side effects from it other than sleeping a a lot, some hair loss and his taste for foods are off; have noticed a lot of irritability he yells more at the dog barking and yells at him to "shut up"
He's had a muffled cough almost constantly too. BUT he still rides his bike down to the country store 10+ miles one way - has missed a day or two - generally the days of the dr/chemo/infusion when we roll into home aft 7-8 p.m.; last Thursday - when we got home from ct he oped not to go as was indy and on chilly side and said he did not feel like it.
Not sure what's goign on but will know something sometime after 12 noon our time But what ever will have to manage and carry on.
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1 ReactionBack from Indy... course of treatment in progress of changing...
The main tumor in lung and the rest of the lymph nodes one in the left arm pit and chest are are all stable and not growing… as of yet - the Dr. is satisfied with what the Pemnrolizumab (Keruda) is accomplishing there
The question is why has it not phased the Supraclavicular lymph node - it had been shrinking but done a complete about face.
BUT the Supraclavicular lymph node is still acting up it is near the jugular vein too & increasing in size along with some near it So once again in less than 2 months (6 weeks) kicks him out of the clinical study
he did not receive the Chemo (Docetaxel) today because of the continued growth of the Supraclavicular lymph node
Dr. is keeping him on the Pemnrolizumab (Keruda) but the clinical study will not pick up the cost of the drug had to get
pre-approved through his insurance for that Dr. wants to keep him on that with because of the good its doing for the main tumor and lymph nodes within the chest cavity. time will tell how long insurance will pay for it 🙁
Take him back to see radiologist this Monday at 2:30 p.m. and then for another biopsy for end of clinical and for Precision Genomics to help find other studies and a plan for further treatment. All else fails I guess it will be surgery
The radiation an be one mega doe or a series and can be 1-14+ days which will mean daily trips to Indy (200 miles round trip) if can hack it they are looking into helping finding lodging where I can take the dog and cat in a cage with us there is one they says is pay what you can afford. If all else fails I guess I will have to board them- pay for motel room/ eats and gas and lock up the house for the duration -
The next Pemnrolizumab (Keruda) is scheduled for the 29th of April but has to be a spacing between the last radiation treatment and it ...
Not sure if I am making any sense of not but it was a lot to adsorb today - but they do talk, explain, listen and go the extra mile.
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2 Reactions@rebur1951 Wow, that is a lot to take in! I'll bet for you all of this is stressful and I will remind you with rue gentleness to make sure you take care of yourself as well. You need to be on top of the game and he needs you at your best. Am glad that the main tumor is stable and not growing. As for the others, I hope they stay the same size, or actually shrink in size. You are making sense and that is a tremendous amount of information to process. Take it as easy and you can and I"m glad you have a supportive team of doctors helping you both out in this tough journey.
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2 ReactionsNot sure if stressful just mind-blowing in way - its been a very rough 2 years - his dad was not making red blood cells and died June 28 - then his mother who was in nursing home going on her 15th year died on Dec. 26th... was hoping things was settling down for while... need to get some tohings accomplished around here but all plans have flew out the window for that today...
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2 Reactions@rebur1951. Gosh, you and he have really gone through a lot. All I can tell you is to slow down--especially mentally and emotionally and do what is most important right now--whatever that is. Have been through similar situations in the past and learned that the more you can right now go with the flow, the better you will cope. Kind of like not swimming against a rip tide. Swim with it and you do come out better than if you fight it. Will be keeping you in my thoughts and prayers. I'm hear because of a lobectomy in my right lower lung to remove a cancerous tumor. Mercifully it had NOT spread to lymph nodes, or surrounding tissue. There is just me and four rescue dogs now, but when I had a family, I recall ho it seemed at times the entire structure of my life was falling to pieces., but it didn't and eventually worked out okay.
Thanks been going with the flow... its been one day at a time... things have been put off that should not of been because of all this and a lot has went to "hell in a hand basket" so to speak... sitting out some things till October holding my breath all will fall into place if does a lot of things will be easier hopefully...
We knew from start surgery was not an option - in fact he was still in biopsy when Dr. came out and told his dad and I it was cancer we did not even have to wait for a dr/office visit for results ast the CT-Scans and PET scans still had to be done ... but the whamy came when the PET Scan showed the involvement with lymph nodes within chest The Surgeon immediately ruled out surgery or radiation because of the scattered sites... and then found a swollen one in arm pit they biopsied it first and showed cancer so did not move on to the Supraclavicular - arm pit one by the end of 12 weeks of 1 week 2 chemos/immunology followed by 2 weeks of 1 chemo it had shrunk down became stable as all the rest That 12 weeks was fun It was Dec-Apr. all good Indiana winter - Tuesday's was his dads dr/possible blood transfusion and then Friday was his day for dr/infusion and his Ct's were scheduled on Monday's so his dad would have Wed/Thurs to recover fro the dr/transfusion
They just do not want this breaking through the skin if at all possible and afraid of going at this moment and a possibility of not getting it all if it boils down to having to have the Supraclavicular lymph node surgically removed... says ins between "a rock and a hard place"
All will work out one way or the other - just got to trust in God to provide and care but its all in God's hands and he knows what he is doing... Nothing is Impossible through him Impossible = I'm possible
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2 Reactions@rebur 1951 Sounds as if you've been doing all that you can. I think there are no atheist where cancer of any kind is concerned. You've just been through so darned much. I feel for you. I truly hope and pray that one way, or another the doctors will get it. as you say with God all things are possible. It is true. Like the impossible--I'm possible. God bless you and yours.
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1 Reaction@reibur1951- Kind of a mixed blessing- some good, not so. I'm with @alamogal635 please take care of yourself. You are going above and beyond your scope of care. Hope, if I need a caretaker one day that it will be someone like you! Are you getting enough rest? Eating well? All functions are a go? lol
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2 ReactionsI go till I can not hack it any longer.... the last couple of weeks been sleeping a lot but a got a half-ass throat cold and have said the hell with a lot of things only done what I have had to do. Yep eating need to loose weight really... COme in here and work on genealogy and loose the reality or try to... but that is hard... I am a "black & white" person when it comes to money, etc. so i do a lot of overthinking on things... reminds me of the A-hole dr's statement "All you care about is the money not him" but medical care, prescriptions etc all boil down to the almighty dollar and if you don't have it the person especially the elderly suffer because the conglomerate health care systems and "big pharm" gives a rast ass in hell whether the common person whether young or old can afford reasonable care and the so called "Affordable health care act" is a laugh - with the medicare summaries I have seen where they have cut paying for thing entirely such as most blood work, x-ray's etc or its such a pitiful small amount to the providers... the co-pay/deductibles are so high that one's out of pocket expense cuts into others things... that's another full rant better stop...
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