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My updates (22 Years old, NSCLC)


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Hey y’all,

Hopefully today will be the day I start treatment. I gave it another week for my platelets to come up so hopefully they’re up. Again I’m a lot more mentally prepared and ready for what comes my way. Wish me luck! 

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I KNEW IT!!!

Congrats, and enjoy a nice, relaxing time in the chair. When I was having chemo, there was a Starbucks attached to the hospital. I used to go grab breakfast and a gigundo cappuccino as a treat after my doctor/NP visit, just before the infusion, and bring it up to eat/drink while I was in the chair.

Remember to go easy on the anti-nausea meds afterward--don't wait till you're vomiting, but wait till you at least feel queasy before you take it. And if you have to take it more than once, be sure to take a little Miralax, to stave off constipation. Otherwise you might wind up miserable and believe me, you don't want/need any more misery.

 

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Alright Ale, time to get this show on the road!  We are all routing for you!  Miralax was an absolute must for me- the steroids you will receive might make you feel pretty jittery.  My floors were never cleaner.   Lock and load.  

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I finished my treatment, it was nerve racking at first but the nurses made it very easy to get through. I got all my medicines through an IV until I get my port. I also have this disrespectful patch on (lol) for neulasta. Now to see how my body reacts to the medicine, hopefully it isn’t too bad. 
 

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OK, Ale your're on your way! It's a very good idea to keep a few notes and or make a mental checklist of when those side effects hit you. That way you will know for the most part most likely how you'll be affected after every infusion. I'll give you a little rundown of my side effects on my four course recurrent 21 day chemotherapy schedule. Keep in mind though that it can be different for everyone.

24 hrs. to about 7 days inclusive after infusion-just a run down feeling of fatigue, a condition of which cannot be cured by sleeping more. My medical team told me that it is good if a person stays at least somewhat active throughout chemotherapy, but during this time it's tough to feel like doing anything. Normally I'll go for a walk up to five miles a day, but I tried that during this period and after two miles I thought I was going to die! So, let your body be your guide, but do what you can and rest when you need to. On the 8th day till next infusion I actually feel pretty good and can do most anything I normally did before.

24 hrs. to about the 6th night after infusion-a bit of an upset stomach during the day which can easily become nausea as it gets later in the evening. My medical team stressed that I had to keep eating with the emphasis on protein throughout chemotherapy. Once again that's tough when your innards don't feel right. The key is to eat smaller mini meals throughout the day with an emphasis on nutritious food. And I would recommend highly to stay away from spicy food during this period. Sure it might taste good, but it will make you suffer in the end. I'm sure they gave you anti-nausea meds (perhaps Zofran or Compazine, most likely Zofran though), but you want to use them sparingly if at all. The reason I state that is if you do take Zofran they will make you constipated. Now, if that is the case then you will have no choice but to take Mira lax and maybe stool softeners as well. Keep in mind though that Mira lax takes up to three days to work so you might want to start taking it on infusion day in anticipation of having to take Zofran after 24 hrs. or so. One good thing is if you have to take Zofran, it works inside of a minute and quells nausea very well. So, if you want to get around the the whole mess with nausea, nausea meds, etc. then what I did was to have lots of crackers on hand. For me it didn't seem to matter what kind of crackers, oyster, soda, graham, animal, etc. When I started to feel the least bit of nausea, I would just eat a pile of crackers and that seemed to settle my stomach very well. Now, I'm saying you should try this and hopefully it will work as well for you as it did for me, but no guarantees mind you. As I stated earlier, side effects are different for everyone. 

Now I know there are a whole pile of other possible side effects, but I was lucky to have just these two as most other folks have as well. Oh, except for the Deep Vien Thrombosis (DVT) that developed 11 days after my first infusion. I noticed my left leg was starting to swell up and I just knew something wasn't right. Unfortunately, this happened on late Friday and I first told my medical team about it on Monday morning. After immediate tests that day it was determined that I had DVT and that can be  deadly. Fortunately it was caught early enough whereby quickly prescribed blood thinners took care of the problem. I was told after this debacle that cancer and treatment can cause DVT to occur. The big lessons to learn here were if there is any problem at all, even if you think it's  small, make sure you tell someone on your medical team immediately. It might not be much, but you never know. 

I hope the above helps... As for me, I'm just past the 24 hr. mark of my second infusion and true to form the effects are the same as the first time.

All I can say for now though is to stay positive, have a good attitude, and know that you'll get through this. Ya, it's a beyotch, but that's the way it is... Stay in touch! 

 

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Glad to help anytime...we're here for each other. Oh, and one more thing, ice cream bars and dreamsicles work as a food group too!! Well, maybe not but they settle your stomach as well!!😆😆😆 

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Okay so my first question with side effects, do you feel any sort of heavy ness in certain areas at first? For me my wrists are feeling heavy and so are my knees. That’s really it, i know it’s going to build up through out the coming days but this is one thing I’ve noticed so far. 

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No...can't say as I've noticed any type of "heaviness" in any particular part of my body. I will say that once the fatigue sets in you'll feel pretty much heavy all over. When that happens just moving seems to be tough, although it's not as bad as it seems if you do. Your energy levels will be down and your stamina will suck, but you'll be fine when the bad days are over. And that happens quick enough...

Just take it easy and you'll be fine...ask any questions or express any concerns you like anytime...😆

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Now that I’ve layed down I really feel the heavyness in my arms and legs. I feel the need to move and do something, I don’t I guess we’ll see. Thanks for last minute response @Jesse L.we’re both Night owls around here 😅

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The "heaviness" you feel is, I imagine, the extra fluids that were pumped into your body. Think about it--there was quite a lot of it. Try to drink a lot of fluids (sounds counterintuitive) so your body can start flushing out the drugs. Note that (just in case you weren't told) your bodily fluids (blood, urine) are toxic for 48 hours after infusion. So be careful using the bathroom, wash your hands well, and you might want to wash underwear separately from your other laundry. That's JUST for the first 48 hours. It's very important to remain well-hydrated to avoid kidney problems. My daughter works for Davita Kidney Health (a place that does dialysis services) and she constantly nagged me to drink plenty of water because not doing so during chemo risks kidney failure.

Getting up and moving around is good for preventing edema and flushing out the drugs, too.  Don't force yourself when the fatigue hits, but as long as you feel up to it, try to take walks or do a bit of exercise. 

If you feel restless right now, that's likely the dexamethasone. 

And remember, everyone's pattern and type of side effects can be a bit different. We can share our personal experiences (and those that seem common to others), but don't be too surprised if you feel different. 

But sounds to me like you got through this just fine--it wasn't as bad as you thought, was it? :) 

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Wow the docs never told me about the toxic part, thanks for letting me know @LexieCat! So far it isn’t bad, just a tad bit of heaviness and a slight nausea feeling, but I’ve noticed that mints help with the feeling of it. I plan on eating small portions for now and drinking nothing but water. 

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7 minutes ago, AleHondaa said:

Wow the docs never told me about the toxic part, thanks for letting me know 

This info was in the chemo guides they gave me, the infusion nurses confirmed it, and if you google bodily fluid toxicity after chemo you'll find it. And it does flush out pretty fast, but they said to take precautions the first 48 hours.

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Yes, what they infuse you with (for me it is Carboplatin/Alimta) is some absolutely nasty stuff. The metaphor I like to use is now you know how a rat feels when it's poisoned. True to what LexieCat stated it pretty much flushes out of your system within 48 hrs., but just enough stays in your body till the next infusion to do what is intended. And the "intended" is to kill short life cells such as cancer cells. Unfortunately however, those drugs may also kill good short life cells in your body as well; hair cells, red blood cells, white blood cells, etc. The good part though is that if faulty cancer cells are completely eliminated with chemotherapy, they cannot regenerate on their own. Our healthy cells however can regenerate because the healthy pattern will always remain for making duplicate healthy cells. 

I was told too that infusions were cumulative in that the poisons in your body built up to some degree over the course of all the infusions a person receives. Given that, I inquired further... I then asked the question if the vast majority of the cancer drugs (poison) in your system flushes out in the first 48 hrs. then what is left in the system to continue killing cancer cells till the next infusion? The answer I got from my medical team was interesting; apparently any short term cell to include cancer cells in your body becomes so attuned to the cancer drugs that if any miniscule bit of those drugs even get near them they basically commit suicide. 

So that goes to show how powerful (and poisonous) those drugs are. LexieCat is absolutely right though; as for myself I drink lots of liquids (water, Gatorade, apple juice) at least the first 6 to 8 days after infusion to help the kidneys and liver flush the poison out of my system. The innards you save will be your own!  

 

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Definitely, actually just bought a 1/2 gallon water bottle so I can drink a lot more water. Also another question, how bad are the side effects from neulasta? I’ve read up that’s it’s pretty nasty side effect of bone aches and muscle pains. Which I’m not ready for..

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I was also told that the side effects were cumulative, but from the standpoint that your body doesn't have time to fully recover (think all the blood tests they do before the infusion). 

My SILs mom had Glioblastoma. She was told to double flush each time she used the bathroom.

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About  Neulasta:  About 10 years ago I had Neupogen during treatment for a non-lung cancer. After each infusion I had to give myself daily shots for several days  Neupogen is a long-acting form of Neulasta, so you only have to have one shot after each infusion. Thte side effects of the two meds are pretty much the same, since they're the same durg.  The most common side effect is bone pain. I had  NO side effects at all. There  is some evidence that Neupogen is a little less likely to cause bone pain, but I don't know anybofy else that's had Neupogen.  I think that it's not given much, maybe they think iit's too hard for people to give shots to themselves. I guess they figured I was a tough old bird and could manage it.

One more thing. The reason Neupogen ie given is to prevent neutopenia (low neutophis, a type of white blood cell that fights infection.) Witth low neutrophils, your can easily get an infection not only  from  bacteria in the environment, but also from the bacteria that normally live on our skin or in our digestive tract. These  infections can become life-threatening quickly . Fever is often the only symptom.  So if you develop fever during chemo, contact your doctor or emergency room immedately. Don''t 'wait until morning". Most people on chemo get this advice but some don't, or don't take it seriously or it gets lost in a bunch of other  nfo.

Fortuately  I got the info. I had neutorpenia and had to go the ER twice. The second time, my neutrophils were zero. I got antibiotics and was okay.

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Well, I would think this is day 2 after infusion and so far I feel fine. A tad bit of fatigue nothing bad. I had a bonfire last night and i stayed out late which I think gave me a sore throat unless that’s a side effect. I have noticed a little bit changes in taste, very slight changes but I have noticed. I mean it’s to early to tell but I think I’ll be fine through this, but we’ll see on the upcoming days. I’ll give you guys an update or question when I have one. For now I’m going to rest and maybe enjoy the nice warm day, go for a drive maybe. 
 

Thank you guys again for being there for me with all this. The information and support definitely helps me out so much. I stopped using Reddit since there was so much negativity on there and I never see that here. Thanks again for being here ❤️

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Day 1 is the day of infusion, so this is actually Day  3. So for me, Day 4 I felt like I was hit with a ton of bricks. Not sick, but exhausted. 

Your experience may be totally different, but that seems to be a typical pattern. If that happens, I wouldn't expect it to last more than 2-3 days at most. I doubt your sore throat has anything to do with chemo.

Glad you got to go out and have some fun!

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Weather has been up and down recently. It was 75 degrees yesterday then dropped to low 60s during the night, which is probably why I have a sore throat. I feel as I’m getting side effects from Neulasta, my elbow joints are very achey and it doesn’t hurt too much but it’s noticeable. 
 

Went on my drive and had my fun. Now it’s time to rest, I feel very tired right now. But I also have a lot on my mind. I’ll just be resting and trying to eat something soon.

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