Julie in SoCal

Hi Linda, I've done 3 rounds of Carbo / Pem. I stayed very close to home for the first 2. It was important for me to get a feel for how I would feel when. After about 10 days into the 3rd cycle I took a long weekend road trip up north of San Francisco. It was wonderful and a needed time of refreshment. I was a little tired, but I was able to do what I wanted to do. I'll have round 4 on Tuesday and 10 days after that I'll take a business trip to the UK. I'm expecting to be tired (and jetlagged!!) but everyone knows I'm in treatment and will give me grace (as long as I do my thing of course!!) I figure risk for infection is a constant - unless you just stay home. So depending on where you're going you'll have to figure what the risk level you're willing to take on. I'd say, see how the first round falls. What sides do you get and how well can you manage them? Then if you're able to manage well -- go for it, but plan it late in the chemo cycle-- after day 7 Shalom, Julie

Hi Susan, Yes, Chemo Care is awesome! I've used them for various questions I've had and it's been so helpful! I posted here mostly because skin blisters wasn't listed in the side effect lists of Carbo-Pem and so I wondered if this was a "rare" one. Who knows, eh? Rashes are no fun! Trust you've got a handle on yours. Julie

Thanks, Tom! I checked Google too and didn't see anything either. I've talked to my chemo nurse (she's amazing!) and as long as there's no infection, there's no problem. So no problem. And they are slowly healing. Thanks again! Julie

Good morning, friends! Last week I had my second round of Carboplatin and Pemetrexed and have had very predictable side effects (fatigue, nausea, vomiting, diarrhea, mouth sores). At the end of the first round I started to get small blister type sores on my arms and the back of my hands. The blisters would then pop and become crusty sores. Gross, I know, but they take a long time to heal. Other than being gross, and an ever present reminder of this "time of life" they're not a problem. Should I be concerned? Thanks! Shalom, Julie

Hi JulieG. I'm a Julie G also. How about that! Are you also a JAG? I sure appreciate your insight into the Carbo/Pem cycle. I'm finding a similar pattern Day 2 I'm ok. Day 3-5 I have the hit by truck tiredness, nausea and vomiting (so lovely). Then Day 6-7 my GI track would get involved. But today is day 8 and I feel pretty good. I ate breakfast and am back to work as "normal". I too have an amazing boss and coworkers. So maybe this is doable!!! It's good to know that this will be the normal cycle. I'm planning a getaway next month and want to put it at a time when I can enjoy it. Thanks again!! Julie

Thanks Tom, Yes, this is the object of the game: safely planning enjoyable activities. So far day 2-4 has been nausea and vomiting and of course not wanting to eat. The nausea is the most alarming as it's fairly unpredictable. Wouldn't mind if that stopped. I haven't hit the joint pain phase, but that's a fairly normal state for me anyway. Thanks again!! Julie

Dear Friends, I started my first round of Chemo (carboplatin and alimta) on Tues. and I'm wondering what the timing is like for the cycle. Obviously, the farther away you get from the poison, the better you'll feel, but how long does it take to feel better? Anyone have any experience with this? Thanks for your help, Julie

HI there, I've had 4 types of immunotherapy for melanoma treatment but have never had a rash. Some of my melahomies have had them, though. Check out this search results page of a melanoma site I'm on. There's lots of posts on immunotherapy and rashes and some possible good ideas. Shalom, Julie

Greetings Friends! We have a plan!!! And it's a good one! Next Tues afternoon I will start my first (of four) rounds of a chemo combo (carboplatin and pemetrexed). The thinking is that this is the treatment that makes treating two cancers comparatively simple. It's quick (only 12 weeks) and very well known. After being in the land of amazing new medicine, it is strangely comforting, knowing that there shouldn't be any mystery side effects to deal with. After chemo I will start 35 or so sessions of radiation. Then Larry the lung cancer will have been cut, poisoned, and burned. This has been one long, scary roller coaster ride and I've hated waiting to figure things out. But this waiting time has given me opportunity to think and pray about what I want in treatment. It's easy to say that I want to be cured (and my 23 year old body back as a side effect). But it's much harder to figure out what I'm potentially willing to give up. This extended time has helped me figure this out. And I'm so grateful. Shalom, Julie

Yes, this sounds like another version of blame the patient or maybe a more "sophisticated version" of sell healing to the vulnerable. Maybe I'm more sensitive to this than others, but I hate it when people hear I have lung cancer and then ask if I smoked. Now I get the connection, but why would anyone ask. We wouldn't ask a breast cancer patient if they nursed their babies! How is it socially ok to ask if I smoked? Because if I smoked then in the mind of the theoretical asker, I could be blamed for my lung cancer and if I sun bathed, I can be blamed for my melanoma. And since the asker theoretically didn't do these things, he or she will be ok. Yes this is dog wash. So, with Respect to Mitch the above poster, what do you intend with your post? Are you selling us healing? Blaming us for our illness? What's your connection with cancer? Are you free of psychotraumaic stimuli? Or are you posting a service? And by the way, no, I didn't smoke or sun bathe! Julie

Hey Cheryncp123, I've been doing this cancer thing now for almost 10 years (I have another cancer life- Melanoma 3c, so I've been doing this for awhile) and it gets me every time. Scans, treatment decisions, transitions, yup all of them send me to crazy town. So I pray and bleed my heart out to the One I know cares more than anyone. I also intentionally plan fun things with friends. My friends know I go crazy before scans or decisions or any transition time, so they're happy to provide a temporary distraction for awhile. I remind myself that I have many people who I love and who love me. I also use the "trip to crazy town" as my friends call it, it to help me figure out what I want. Yes, I want to be healed, truly cancer free with my 23 year old body again (HAAA!), but often the crazy talk in my head is also telling me something else. I think I'm just returning from crazy town. Right now I'm trying to make treatment decisions and, while they're an educated guess at best, I'm complicated because of two active cancers, so figuring out the way to go is complicated (and of course seems to have taken a long long time to make this decision). But as I reflect on the decision making process, I've realized what I want in the treatment. I've figured out my priorities and what I'm comfortable risking. At the beginning of this I didn't know what priority I put on things. I couldn't answer the question, "what do I want" with more than "to be healed". This is a given. of course I want to be healed! But how much quality of life am I willing to give? If I am completely deafened (I am near deaf, now) is this ok? If I can no longer walk because of inflammatory arthritis everywhere, is this ok. What am I willing to trade? Wrestling with these questions and coming up with some kind of squishy answer has been huge. The decision is still coming (we'll decide on Monday) but I have found peace with it. Or at least for now, I'm not on the indefinite loop riding around crazy town in my head--off ramp found! And this is huge. So I guess my strategy is to : Acknowledge God plus nothing is enough because I was loved before I was born! (I think of this as taking God to crazy town with me). Be good, kind, and gentle with myself. Lean into my friends Listen to hear if I'm telling myself anything in the crazy and learn from it. Be good, kind and gentle with myself and tell the committee in my head that I've heard them so "thank you , you can shut up, now". Continue being good, kind and gentle with myself and love others. I wish you peace (and an appropriate off ramp) Shalom, Julie

60% positive for PDL-1 is a good thing as you'll have options for immunotherapy in both Opdivo and Keytruda. This is really good news! Shalom, Julie

Hi Jan, I've used three different drug assistance programs and all three were run by the pharmaceutical company. All I had to do was apply, send in the paperwork and my co-pay was drastically reduced. Try the Xalkori assistance website. The other resource I've used is the hospital's support staff. The hospital I go to has a staff person who is familiar with various copay assistance programs. She was the one that has introduced me to the various Pharma programs. Hope this helps. These drugs can cost an arm and a leg, Shalom, Julie

Hi Lbelle78, I have had Opdivo's twin, Keytruda for melanoma. I was on it for almost 2 years and watched my tumors shrink away (that was pretty cool!). Unfortunately my LC doesn't respond to PDL-1 (or Keytruda would have killed it off in the melanoma war). But I digress... I had a fairly easy time with Keytruda. I was a little tired and achy (flu like symptoms) a day or two after the infusion. Sometimes I had a headache, and my joints would hurt. But after a few days I was back to my regular normal self. I was able to work and if I timed it right, travel. The thing I learned pretty quickly is to report everything that was out of normal for me to the nurse. They were a wealth of information and help in dealing with the treatment. The other thing I learned is that it takes immunotherapy drugs a little while to work and it's possible that you will see pseudo-progression, that it it looks like your tumors are getting bigger rather than shrinking - that's your body at work killing those suckers! - before the tumors start to melt. Be patient with the patient is what I've heard. So prepare yourself for the long game, and not necessarily the short game. In melanoma land, I have melahomies that did not respond to a PDL-1 drug (Opdivo or Keytruda) until months after they stopped the drug. But they've had complete response. May you too have a complete response with minimal side effects. Hoping Opdivo kicks your LC to the curb! Shalom, Julie

Thank you BridgetO and Tylalla and Susan! I appreciate your advice! I'll check out the links. I think I'm most concerned about the radiation. I've done chemo-like drugs before (various immunotherapies for melanoma) so I've managed the sfx of fatigue, and nausea, and the like. But radiation is a whole new world to me. And to be honest I'm not keen on it. I've seen a friend's experience with radiation and radiation burns and it wasn't pleasant. Don't get me wrong, if the Rad Doc presents a reasonable case for it I'll do it, but it freaks me out and it's gotten into my head. So there it is- I just don't like waiting and I want this whole thing to be resolved and over, done, and forgotten. Enough said. Thanks for listening, Julie

Thanks Tom I'll take a look. Here's the link: 10 Steps to Surviving Lung Cancer Julie

Good morning, Friends! It looks like I'll be starting chemo and radiation soon. Next Tues I'll talk with the radiation onc and we'll come up with a plan. Then sometime the week after that I'll talk with the Rock Star Onc and get a chemo plan together, but it's most likely Carboplatin/Pemetrexed. Our thinking on the LC vs Melanoma treatment debate is to take out the melanoma intransits and watch and wait. I still have an option left for Mel, but we'd rather not use it for small fry like intransit tumors on my arm. So on Tues they'll come out (it's just 2 minor punch incisions- been there, done that, have the scars), and I'll return to NERD status. Many of you have walked the chemo beamo road. What tips do you have? What's the word / general wisdom on this treatment? What have you all found is the best way to get through? All wisdom and advice gladly accepted. Thanks!! Shalom, Julie

Ok I can be a dope sometimes! I didn't notice the footnotes in the lung cancer 101 section. I just read it fast. it's the papers in the footnotes that I was looking for. Thanks Tom for sending me back there! Julie

Thanks Tom for the Post, I've checked LC 101 and it's a good resource, but I'm looking for stuff a bit more specific. Unfortunately with 2 active primary cancers, I'm not good rattie material for clinical trials, but I'll check it for results. Thanks for the tip!! Julie

Greetings, Friends! Just found out that I have stage 3 adenocarcinoma with the EGFR mutation. My awesome surgeon talked about chemo and radiation as coming next. I'll talk with my oncologist on Monday, and we'll put together a plan, but I'm a researcher and so I"m looking for clinical trial report & results that show how effective various combinations of chemos are and what the best timing of chemo and radiation. Does anyone know where to look for these reports? Or even a good summary of the reports would work. Essentially I want to see the numbers in context. Does anyone know where to look for these? Thanks for your help, Julie NSCLC Stage 3 EGFR+ PDL1-

Thanks, I wouldn't have thought about flying... though I did wonder about when I can scuba dive again. Probably not for awhile, yes. Blessings, Julie

Hi there, Friends! Friday I'll go back to the surgeon's office to get my stitches out (Can't wait!!!) and hear my biopsy results. I hate it that I have had to wait 2 weeks to hear my results, but it is what it is. In my other cancer world I get scans in the morning and then see the doc in the afternoon. I'm a total cancer princess with very little waiting! Basically I'm just not used to waiting 2 weeks. But now I'm just complaining . My questions for you all are: What questions should I be asking my surgeon? I can see asking about clear margins and staging. How about tumor biomarkers-yes? anything else? Thanks for your help!!! Shalom, Julie

Hey Katie, thanks for your post! I'm doing well. I just got home yesterday afternoon from the hospital. It's tiring to be at home with the kids and chaos, but I wouldn't have it any other way. Nurses bringing you everything you need is wonderful, just not reality. My VATs Lobectomy went well. No problems or complications and the doc said that the lobe and lymph nodes looked good. Of course I'm still waiting for the path report to know for sure. I should find out sometime next week. So I'm just hanging in there - using my friend the incentive spirometer, coughing, and taking walks. Thanks again! Julie

Hi Cindy, Thanks for your suggestion. Yes, I've had a biopsy (many, in fact) and the diagnosis is: primary adenocarcinoma of the lungs, and primary malignant melanoma in lymph nodes. Originally we thought the lung funk "Larry" was melanoma. It made sense. I have melanoma and melanoma likes lungs. But when it didn't respond to any melanoma treatment (while other tumors were) we biopsied it and found out that it is adenocarcinoma of the lung. Larry the lung tumors eviction is in a week. Julie

Greetings friends, i have just found out that melanoma has returned. I had done extensive immunotherapy, and thought I had kicked it to the curb this last time. But alas it is not so. Do any of you know how having two cancer works? Do you treat both at the same time? I'm for a vats lobectomy a week from Monday, so I'll know more about my LC staging then. I just know I've had this mystery meat now named Larry the lung tumor for awhile, so I'm not optimistic that I'll turn out to be stage 1, but then I'm getting ahead of myself. any thoughts on two cancers? I know it's not that uncommon.. thanks, Julie