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Carbo / Pem Round 1 Questions


Julie in SoCal

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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

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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

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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

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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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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. 

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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

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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. :)

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  • 1 month later...

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

Edited by LindaD
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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

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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

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Thank you Bridget and Julie.  I love your advise and support here.  I didn't have neutrophil booster or low neutrophils from chemo and radiations that I did last year, as you indicated that I may not know.  I will ask my oncologist to see if I can be tested.  Will plan with my oncologist for the chemo regiment.The trip I planned for is visiting urban cities in China (also jet lagged)since months ago, and I love travel. I think I will be going this trip just to put everything behind me and enjoy my trip.  "Living actively than waiting to die" makes lot more sense!  

By the way, bringing masks with you to travel will be good idea as I traveled to Dawson city in Alaska few months ago, the mask kept me breathing better from all their sandy dusty roads.

Love Linda

 

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Ladies,

I traveled extensively during chemo and after treatment, even with a challenging susceptibility to catching chest infections.  My medical oncologist wrote a note to explain my treatment details and medical history and provided a basic load of fourteen days Leavaquin,  This was to be used if I developed symptoms and was delayed in seeking or finding medical treatment.  I had to use it several times.

Go see the world.

Stay the course.

Tom

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Hi Julie,

I had 6 rounds of chemo carboplatin and taxol along with radiation and I found this information on the Govt. site PubMed.      https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4791148/   ... 

and https://www.cancer.gov/about-cancer/treatment/cam/patient/cannabis-pdq   

National Cancer Institute (NCI) Cancer Information Service

US National Library of Medicine 
National Institutes of Health

"For the cancer patient, cannabis has a number of potential benefits, especially in the management of symptoms. Cannabis is useful in combatting anorexia, chemotherapy-induced nausea and vomiting, pain, insomnia, and depression."   When I started eating this in a cap I took very small dose at bedtime and it really helped me sleep too.  I did not get any of these symptoms.  Good luck on your journey..Tomm

 

  

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Julie,

I took the time to read Tomm's posted sources suggesting cannabis is a reliable and reputable cancer treatment agent.  I note three points from Tomm's Current Oncology Journal citation:

(i) cannabis may relieve pain and discomfort of side-effects; [emphasis added]

(ii) the Author's conclusion paragraph  - "Preclinical data suggest that cannabinoids could have direct antitumour activity, possibly most impressive in central nervous system malignancies. Clinical data about the effects of cannabis concentrates on cancer are as yet unavailable. Oncologists could find cannabis and cannabinoids to be effective tools in their care of patients living with and beyond cancer."; and [emphasis added]

(iii) the author's conflict of interest disclosures are all commercial companies growing or marketing cannabis.  Therefore, the author was likely paid to produce the journal article.

The National Cancer Institute citation clearly states: "At this time, there is not enough evidence to recommend that patients inhale or ingest Cannabis as a treatment for cancer-related symptoms or side effects of cancer therapy."

While Tomm may have benefited from taking cannabis in his treatment, the National Cancer Institute does not have sufficient evidence to recommend cannabis for direct cancer treatment or side-effects caused by cancer treatment. 

No doubt, cannabis produces a euphoric feeling that is desirable, but no medical authority I know of has deemed it ready for prime time therapy.  And yes, lung cancer survivors deserve a little euphoria in their lives!

Stay the course.

Tom

 

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I found any discomfort didnt start until id had a few infusions and the the biggest problems were nausea (but never vomited ) but the tablets they gave me helped heaps and constipation was chronic for a while but these problems came regular at same time of cycle so i learnt quickly how to handle these things with regular supplements and was told my hair would thin but not all fall out and this didnt start happening until the last 3 infusions and kept coming out for 6 weeks after finishing ....but growing back now 

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