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Hi I was diagnosed in June of 2015 with NSCLC i am now 54 and i am doing great the infusion nurse as well as my doc says that i should be the poster child for Opdivo. When they say that each cancer patient is different they were not kidding, i can't seem to find others that have the same things going on with them as i have going on with me.

Hello Meloni, sorry for such a late reponse. I was 3a because it had spread to a center lymph node. I finished 7 rounds of chemo and 35 radiation sessions concurrently and 6 weeks ago had an upper right lobectomy. They removed all the cancer but the doctors are still wondering if i should do a couple more rounds of chemo to be on the safe side.

Karin, My mom had an right upper lobectomy in January 2015. She continues to have pain (no numbness that she talks about) around the incision and back to her shoulder blade. Her surgeon and oncologist say it's pretty common due to all of the nerves in that area. The pain in her shoulder blade was bad enough recently that she was pretty sure cancer had spread to her bones (she's currently battling a recurrence on her trachea). Her scans showed that the cancer had not spread. She has tried different bras because the scar is where they rub but hasn't had much luck. There are some ladies at the cancer support group that she attends who swear by rubbing lotion with marijuana in it on their scars to help with pain, but my mom doesn't want to use anything like that - I see you live in WA, so maybe this is an option for you (For the record, I am not in support or against it!). I've heard both good and bad about it and you may want to check with your oncologist before thinking about trying it. As mentioned by Tom, water aerobics and just being in the water also helps my mom with the pain. Sorry to hear of your constant pain, take care.

Bernie, I am very happy to hear Opdivo is working so well for you! My mom just began Keytruda and we are hoping to have positive results too! I'm sure some other folks will soon chime in on your post that either have personal experience with Opdivo or can point you in the right direction. Take care!

That's very interesting Bernie. In the days before my last review with my medical oncologist, Opdivo was in the news here in Australia. It had been accepted onto the Pharmaceutical Benefits Scheme, which financially is a very big deal. My medical team should be warned that eventually I will test them. In this case Opdivo was the subject. Dr. Jain passed the test. Instead of dismissing my interest, he explained that at the three centres that he consults, he had trialled 50 patients with varying success over the past 12 months. Some were patients who had been given weeks but had gone on for 12 months on Opdivo. I'm a little skeptical of ibs and abs.For some they work spectacularly, others they are useless. it's the working out who will benefit is the hard part. Wayne

Hi Karen. I had my thoracotomy to take out my right upper lobe of lung in 1998.. They broke 2 ribs to get into my chest besides cutting all the muscles on my back. Those ribs never "healed" or they never came back together like before the surgery. It hurts if I wear anything that tight around them. (Guys don't have that problem). So I am careful when I dress. I do go to workout at LA fitness. ( local in Minnesota). Even after surgery I went to the Y and did water aerobics. I pray you will be feeling better soon. Donna G

thanks for answering me, yes i am under the care of my oncologist and had a scan in march. I also work at the same Hospital where i had my surgery and see my surgeon often. He is aware but does not have an answer for me. I had a right lobectomy. My Pulmonologist thinks it has something to to with the surgical approach and technique. It all started getting bad when i stepped up my workouts and started yoga again. Maybe i just need to lay on the couch and eat ice cream and be waited on. HAHA just kidding.

Thank you, Tom. I agree with you and am going to talk to my parents tonight about getting another doctor involved. Also, regarding the Neulasta and Procrit... she has received a Neulasta injection after every treatment and her white blood count has never suffered. I went back through all her CBC reports just now and see that her Red Blood Cell count, Hemoglobin, and Hemacrit have been flagged as "Low" ever since she had her first treatment. In each blood test since that first one, these three values have steadily decreased. Her only side effect from chemo has always been just an achy, sore flu-like feeling from the Neulasta and then some lightheadedness and fatigue. The lightheadedness just got worse and worse with each passing treatment until her platelets were flagged after the third treatment and then her hemoglobin after her fifth treatment last week which led to the blood transfusion on Friday. I've never once heard the word Procrit, so I'll be sure to ask her doctor if that should have been an option for her. Thank you so much for your detailed email and I will be sure to keep you in the loop on how this progresses.

MalTay, My bottom line answer -- second opinion. I'd get a second medical oncologist involved. Now I'm not a doctor and Keytruda is showing impressive results but immunotherapy is a relatively new treatment modality for cancer in general and lung cancer in particular. There could indeed be some reasons why her current doctor is reluctant to start a Keytruda routine, but my doctor would have to explain the reasons, in detail. I'd expect a complete explanation of what potential side-effects were of concern and why. A tumor board should not need to be consulted to explain side-effects. So I'd be shopping for a different medical oncologist. I'm also wondering why Neulasta and Procrit were not administered to address low red and white counts. This is a very typical side-effect for most conventional chemotherapy and the administration of these two drugs is nearly universal about 3 days after infusion. I had in total 18 infusions of Taxol and Carboplatin and for about half, I received injections of Neulasta and Procrit to kick start red and white cell production. Chemo does beat one up but it also beats up tumors. Something is not adding up with her blood count problem. The only good thing about chemo side effects, my experience, is then tend to repeat in the same order and intensity after each infusion. Yet, your mother did not experience low counts till after her fourth. I had low counts after each infusion and sometimes, they were low enough to warrant injection of the aforementioned drugs. So, something else may be going on with her marrow. If it were me, I'd be consulting with another medical oncologist. Stay the course. Tom

Sherri that's great your MRI was clean same as my husbands. He starts this coming week 2 nd cycle chemo and first round of rad .last night and all day today we spent time in hospital because he started a fever.he was doing so good before that. He is all better now will see how round 2 does. Enjoy your haircut! Best wishes Michele

Thank you all so very much for the warm, supportive welcome. What a long week last week became. Stayed with my daughter so I wouldn't be alone during the day and she could take me to my appointments. Forgot to grab my laptop when I went out the door. My husband works long hours and is struggling so much with his emotions and not being able to be with me during all this. Had to reassure him that I wouldn't be able to get this treatment if not for him and all his hard work. I had my first cycle of chemo and my first week of radiation. Did well on the first day, but wow, did Day 2 wipe me out. Day 3 wasn't too bad, except that's when my taste buds changed. I'm doing four 3-day cycles of Cisplatin/Etoposide and at least 30 days of radiation. The MRI came back clean, as well. I am def. limited stage at this point. I felt like I hit the lottery when my oncologist told me the only thing in my head was my brain, lol. Love that shirt, Susan. My daughter chopped off my ponytail, but then my kids said I should leave my hair short for a week because it's been so long since they've seen me with hair that short. I left it, but it's going bye-bye tomorrow. Bed head all day isn't a good look for me. My youngest still shaved his head in support. I'm just so thankful for all the support here, and that I found this site, but wish so badly that no one needed a place like this. This new diagnosis and knowledge is the scariest place I've ever been.