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

Risk of infection is largely due, I think, to low neutrophils, and you won't know what that is unless it's tested. Have you had low neutrophils during your chemo? Have you been on a "neutrophil booster" such as neupogen or neulasta?  
I'm a big fan of travel. I  had chemo and radiation (for an earlier non-lung cancer), followed by additional different chemo. Between those two, I took a trip across country by train, something I'd been wanting to do for a long time. This was against the advice of my medical oncologist, not because of infeciton risk but because she wanted me to start the second chemo regimen right away. I told her it would have to wait a week.
If it were me, I'd be inclined to go on the trip, unless I'd had severe neutropenia after rounds of chemo. Ir would partly depend on where I was going, also. I'd be disinclined to go to less developed countries or some adventurous outdoor activities for fear of unaccustomed bacteria and also because of the difficulty of getting medical care if you do become ill. I'd also think about how to reduce airplane germs--those cause me colds and such often. You can take antibacterial wipes to wipe doen your armrest, tray table, etc, and I'd consider taking my own  pillow or pillow cover and blanket. And definitely take and use hand sanitizer.
A  couple of women who were in my support group continued to travel a lot, despite advanced ovarian cancer and ongoing treatment. One went to China between rounds of chemo.  Another went on a tour to the Galapgos Islands, became ill, and had to be airlifted out. She recovered and was philosophical about it " Oh, well, I had good travel insurance". She continued to travel . Both these women were big role models for me. They continued to live actively, rather than waiting to die. 
I think it all depends on your risk tolerance, Nothing is risk free. If you decide to go, I wish you safe and happy travels.
Bridget O

Hello Julie in SoCal, I am going to have 4 cycles of Carbo/Alimta, 1 in every 3wks.  Would you give me insight as how you prep yourself to you getaway? How long after your last cycle for you to travel?   I planned a getaway ( international) months ago and really want to do it but now with the treatment scheduled, one oncologist says I will be ok to go while another oncologist says it's risky for infection if I go 2-3 wks after the treatment .  I will be doing 2 -3 cycles first,  then travel, come back for last cycle, but not sure if I can handle it.  Thank you for your help.  Linda

Julie,
Don't know if you know about chemocare.com but it's hosted by the Cleveland Clinic.  I've found it to be very useful.  Here's a link to their page on rashes: http://www.chemocare.com/chemotherapy/side-effects/skin-reactions.aspx
Glad that the onc RN says not to worry.  I'm currently dealing with a rash on my scalp following chemo and a shaved head.  What a mess....

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

Hey Julie,
I don't have a clue.  I burned up Google looking for skin blisters for your chemo drugs but didn't find anything.
I'd certainly let your medical oncologist know.  A fast route to the oncologist might be through your chemo nurse.
Stay the course.
Tom

I have had 3 rounds with cancer. My first was in 1992, I was diagnosed with Gallbladder cancer. No symptoms, just one gallbladder attack. For whatever reason, the doctor decided not to wait but to remove it. I had surgery two weeks later. The strange thing was that when I went back for the follow up, I came to a complete stop when we were walking into the building. I can still  remember it so clearly. I had such a feeling of dread pass through me. I told my husband that I had a bad feeling that they found something bad, of course he thought I was being silly. They had, the pathology report came back ,found cancer. Now, it is very rare and they didn't know how to handle. Some research was done and another surgery to clean up and take samples. It was contained to the gallbladder and no further treatment was needed. Then in 2008, I had a routine appointment with my PCP, normal yearly chest x-ray was done. They found a small spot in my left lung. So, tests and more tests. They removed my upper left lobe in April 2008, stage 1B, N0, M0. I started feeling very sorry for myself, moping around the house and eating and gaining so much weight that I could hardly move. One night I decided that I had survived cancer twice but I was going to let the weight kill me. So, I started working out and watching what I ate. I lost the weight and started running. I have done countless 5k's, 10k's and 2 1/2 marathons.  There was still a place inside me that felt guilty for surviving without having to go through treatment.   I was hesitant to tell anyone that I was a lung cancer survivor, still such a strong stigma  attached to it. Fast forward to 2017. Routine blood work, except my PCP ordered a different one that my oncologist didn't order. The numbers were on the high side, wait a couple of months and repeat, higher yet. OK, the start of all the tests again. Small nodule in my upper right lung. Saw a new oncologist (mine had retired), he said let's wait and see, next day it went in front of the tumor board, change of plans, lets get rid of this now. June 20th they removed my upper right lung, stage 1A, N0, no  further treatment need just monitor for the next 5 years. I am walking more and getting ready for my first 5k post surgery. I have decided that I can become a voice for early detection. I have lost family and friends because they waited until it was too late. Former smokers and people with a family history of cancers should get regular check ups so anything can be caught early in the game.I want to let people know that you can have life after lung cancer, it is not always a death sentence. My first 5k is on September 10th and it is for cancer patients, all money raised goes to support the patients in need. I have had a special shirt made up just for my runs.
I can't attach a picture of the shirt, but the back reads:
Early detection works
1992- gallbladder cancer
2008 Lung cancer - upper left lobe
2017 Lung cancer - upper right lobe. 
The front simply states that there is always hope.
 
Thank  you for letting me share.

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

Hi Julie... yes, this is definitely doable. Not always easy, but you'll learn that you're stronger than you ever imagined you could be. Glad to hear you're feeling better. 
Not a JAG, I'm a JLG.

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

Hello Julie, another Julie here. I had 4 cycles of Alimta and carboplatin between Nov. 2016 and Jan. of this year. Chemo day was Thursday. On Friday I felt well enough to go to work (thanks, decadron!), and by Sunday afternoon I began to get the "hit by a Mack truck" feeling. I didn't experience nausea, just some queasiness, easily remedied with Compazine if it got bad enough. I went to work on Monday and Tuesday the following week, again, I wasn't 100% but was functional and able to do my job. My coworkers and bosses were very supportive. I'd get through the day, go home and flake out on the couch (my husband and sons would fend for themselves for dinner). By late on Tuesday I'd start to feel a bit like myself again, and then by Thursday or Friday I'd be pretty much OK. So, nearly a week of not feeling great. As others pointed out, this played out pretty much the same for each cycle, which made it much easier to plan how active I could be during the week. By the time the next cycle rolled around I felt pretty good. 

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

Am presently doing Cisplatin/Alimta cycles. Very tired and nauseated day 2-5. Then the tiredness gets better. But for me the nausea hangs on until about day 9 or 10, just not as severe. And then there's the nasty tasting food. This goes on from day 1 to about 7. I don't have the issue with not wanting to eat. Probably because I have 3 says of steroids each round and it eating seems to hold back the nausea somewhat. To me, my second round seemed easier than my first, but that could be because I was farther out from radiation and had found some ways to cope. I've actually gained weight through all my chemo treatments. In fact, I'm very swollen after each treatment. Each on ours about 6 lbs. on me that gradually subsides over the next week. I eat watermelon and cucumbers which are natural diuretics to try to get rid of the water bloat. Had a few mouth sores so make a habit of rinsing mouth with salt/baking soda solution at least every morning and if one pops up more often. For me the nausea that seems to hang on has been the worst. But I've been in an antibiotic that can also cause stomach upset so I'm hoping not having to take that will help next round.


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Julie,
It varies from person to person but I found it constant from infusion cycle to infusion cycle. My experience -- the only good thing about chemo side effects is they repeated. So I had nausea about 2 days after infusion and joint pain 3 days after infusion. Nausea was a one day problem while joint pain was a 3 day ordeal. And this sequence repeated the same number of days after infusion. Use a cell phone calendar function to chart onset. Then you'll know when you can safely plan enjoyable activities. 
Stay the course. 
Tom

Thank you! So very, very helpful!
Susan

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

That's good to hear, Julie! Please keep us posted!
With gratitude,
Lauren
--
Digital Community Manager
LUNGevity Foundation

Julie,
You said it best!
Stay the course. 
Tom

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

A treatment plan gives peace and a place to focus, at least in my mind.  Good luck as you start your treatment!

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

Julie
And I nursed 2 of my 4 children and still got breast cancer. This and no family history was why I really never worried about that. And I can affirm that breast cancer patients get a lot more public support than lung cancer patients having walked in both of those shoes. I don't believe stress causes relapse, but we do all feel better without it. But easier said than done in the situation.

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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

Mich,
If "successful treatment of oncological diseases is impossible without the psychotherapeutic elimination of the oncodominant", and I didn't have psychotherapeutic elimination, how do you explain my successful treatment.
Impossible has a specific and clear meaning.  No scientist or physician, Russian or otherwise, would use the word impossible in that context.  Therefore, I conclude Vladislav Matrenitsky M.D., Ph.D is not credible.
Stay the course.
Tom