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JustMe

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About JustMe

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    Female
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    NEW HAMPSHIRE
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    USA
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  1. Hi Tom, No, the plan is just taxotere, not combined with Keytruda or any other chemo/immunotherapy. It's a tough decision to switch treatments even for his oncologist who is consulting with another onc at Dana Farber first. The first scan was May 10th, but treatment didn't start until 6/23, so we wonder if possibly it had grown during that time period and...and also typically immunotherapy takes a bit longer to start working in general than chemo...but on the other hand, the onc is concerned with time...and if it's NOT working, we should get started on something else asap. These CT results were such a surprise because my husband really felt it was working... Oncologist has said that it's husbands choice to continue with treatment and says we're not trying for a cure, but a maintenance point...his concern about time scares me, it seems too soon to be saying this stuff... It's upsetting that the 'best bet' isn't working and also that he has to start over with treatment and figure out which side effects he'll be hit with. He's exhausted all the time...and depressed. It's heartbreaking. The main tumor is now 8.6 x 7.3 cm. There's new, higher nodes involved and worsening of the ones already involved. Kidney masses unchanged. Pleural and pericardial effusions apparently too. I'm being as tough as possible and I'm in a massive Mama Bear mode when it comes to him...and we are trying to enjoy the summer and our children, including an 11 year old daughter, as well as grandchildren and family and friends...but when I'm alone, I'm constantly on the verge of tears. I'm realizing how important my own health has suddenly become...and yet I can't seem to make changes for my own benefit/my daughters benefit at the moment...and then there's our finances with him unable to work very often... Ugh...I need to put on my positive pants.
  2. Hi there. Found out the pain was 2 broken ribs undetected by x-ray. Had CT scan results today, disappointing. Main tumor is slightly bigger and new nodes are involved. Already switching treatment from keytruda/alimta/carboplatin to just taxotere. Frustrating...because we were just getting started and that treatment combo was supposed to be the best bet... He had a miserable time after round 2...pneumonia, thrush in his mouth, fevers, low BP, low blood counts of course, back and forth to doctor several times... Kind of numb today...
  3. I should also say the xray was weeks ago when they determined there was no broken rib...other than the xray, this hasn't been investigated...
  4. Hi Folks, Just curious about people's experiences with pain and locations of it... Husband has 8.5cm tumor wrapped around center airways, had first treatment last Friday...also mets to nodes and kidneys But all along he has also had severe pain on the right side, kind of mid-torso, had x-ray, shows no broken rib, they thought it might be torn muscle from coughing, started getting better, now worse and docs keep blowing it off saying it's pain from the LC itself...seems strange to me though, the location of it...
  5. Thanks very much Susan for your reply...
  6. Thanks very much Bridget and Tom for your replies... I'm feeling better today, the tougher, positive me. I'm encouraged from this place and seeing so many long term stage 4 survivors... I've already read about Keytruda, but looked up more info last night. Assuming insurance agrees to pay for the treatment, it seems like the way to go. We are happy with the doctors here in NH and they are also affiliated with Dana-Farber in Boston so he can't receive much better care than that...2nd opinion direct from Dana-Farber is pending. Some days, like yesterday, his cancer is all I can think about...it's overwhelming. He's overall doing really well mentally. The only day he really struggled was after informing his sister of his disease, she completely fell apart, wanted to know his funeral plans, talked about those fu**ing statistics we all are aware of...she scared him. So going forward, I am going to be telling people what's going on without him being present. It isn't worth the effect their reactions have on his nerves. Some more details...NSCLC poorly differentiated, but likely adeno, 8.5cm tumor wrapped around center airways, mets to kidneys, inoperable, still waiting on genetic testing results, but onc thinks keytruda/carboplatin/pemetrexed is the way to go regardless of mutations...apparently certain mutations are rare in former smokers/men...? Treatment is planned for once every 3 weeks with a CT scan after 6 weeks. He's currently on 20mg of prednisone and an inhaler to control the cough and help his breathing, he's working still. His cough and breathing have gotten worse the past couple days so I'm keeping an eye on him...concerned a bit... We go camping annually the weekend after the 4th. He is scheduled for chemo 6/23. I'm concerned about if he'll feel well enough to camp (for my daughters sake)...it will be 2 weeks after infusion. I know only time will tell how it will affect him, but I'm anxious to hear from anyone else who has had the same cocktail...
  7. This is the treatment my husband is starting next week for NSCLC stage 4...combo just approved by FDA apparently? Is anyone else getting this combo? How are you doing? I'm nervous about side effects.
  8. Treatment starts 6/23. Haven't told youngest daughter yet...she's only 11. I'm blowing myself away with how tough I've been so far, but it's one of those days where I'm constantly on the verge of tears. It's all obvious to you folks isn't it...as far as what I'm feeling. There's no point in typing it all out. My husband is 44. Tall and strong and gorgeous. 8.5cm tumor wrapped around center airways, mets to kidneys. Treatment is keytruda/carboplatin/pemetrexed...combo just recently approved by FDA apparently? I'm nervous about side effects. Meh. Loads of love to all of you.
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