Done with radiation and weekly chemo. [Stage 2 NPC]
With Stage 2 [T2N0M0] NPC, I'm finally done as of yesterday with 35/35 radiation and 6 chemo (240 mg/m2 total). It's been pretty tough, I started taking painkillers a week ago and have been on them ever since. I do not have a PEG, good in some sense, although a part of me wish I had it around as it would make life a bit easier. I do have the benefit of family around, who's been supportive, and at times, the only reason for me to stick to the plan and liquid meal schedules. Pretty much ensure + blended liquid diet. My throat is pretty bad, and it's getting worse from the cough caused by excessive phlegm. Been on pain meds to deal with this. Hopefully the healing can begin soon, and I understand it takes a while. Thrush is back, and was precribed difflucan to deal with it. I've had almost daily spikes of temperature to 101F for 4-5 days, that comes down after painkiller is taken. Body is still fighting something.
Side effects during entire treatment (for the benefit of forummers): Tinnitus, Mucositis (grade 2-3), Thrush, Indigestion, Constipation, Neuropathy (slight only), Radiation Burns on Neck, Loss of Taste, Xerostamia, High Resting Heart Rate (100 bpm all the time after measuring in week 6), Receeding hairline, Nausea (managable)
I still have adjuvant chemo of cisplatin + 5FU prescribed by my oncologist. I'm still thinking really hard if I should follow through with the plans since according to my PET is is a T2N0M0 (S2). Anyone with experience with taking/not taking, or positions that certain hospitals take on the matter would be appreciated! Seems like this is still the "standard plan" for anyone with Stage 2 - Stage 4 stages; but wanted to learn what your experiences were.
Comments
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Kenny...do you have NPC??
I'm asking because I don't remember, and the treatment they have lined out for you is what I got for NPC....the concurrent rads with Cisplatin, and THEN Cisplatin with a fanny pack of 5FU. This seems to be the golden standard for NPC.
I made it all through the rads/chemo without using my tube.....within 4 days of getting the 5FU, I was more than grateful that I had a tube. 5FU turned my mouth into hambuger....my lips bled, the mucositis was beyond anything I had during rads. So....I want you to know it's never too late to get a tube....
p
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Done
It feels so good to hear that word. With the radiation over, your body can finally heal. You've heard it here before, but it bears repeating, "Keep drinking water". It will help thin the mucus. You might try Mucinex too. I did not have the chemo you did, so can't offer any advice for your decision, but want to wish you well.
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Glad to hear you finished
Glad to hear you finished radiation. It is a big milestone and hope you recover from the side effects soon.
I am NPC stage 4 also and now it's 7-8 weeks after treatment. My doctor didn't schedule adjuvant chemo for me and they said it's be done like this way in their center for years. I don't get my first scan after treatment yet, so I can not justify its impact. But I think you can definitely confirm with you doctor.
God blessing.
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Adjuvant
Phrannie: I had S2 NPC. Should have mentioned that! I'll get my original post edited
Sounds like you went through the full package! That must have been rough, which is a mental cross road for me right now. Barry: Can you describe your treatment plan? Wow that is quite interesting that S4 they took out adjuvant, while mine is advocating adjuvant at stage 2! If you also don't mind sharing which Cancer center you're visiting. Mine is Oschner down in LA. By the way, how are you doing now?
MrsBD: I'm going to try that. That's interesting, I also realized that during meals. I have a bottle by my bedside at night, but it's kinda disgusting to drink at night especially with the foul mouth! But I did realize it help (hopefully the bacteria dies in the stomach!).
wmc: Thanks for the kind words. I'm hoping less than 8! It is still cooking... My first goal is getting rid of this thrush. Never had it, only had it after treatments and at bonkers on what to do about it besides popping pills.
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KennyKenny- said:Adjuvant
Phrannie: I had S2 NPC. Should have mentioned that! I'll get my original post edited
Sounds like you went through the full package! That must have been rough, which is a mental cross road for me right now. Barry: Can you describe your treatment plan? Wow that is quite interesting that S4 they took out adjuvant, while mine is advocating adjuvant at stage 2! If you also don't mind sharing which Cancer center you're visiting. Mine is Oschner down in LA. By the way, how are you doing now?
MrsBD: I'm going to try that. That's interesting, I also realized that during meals. I have a bottle by my bedside at night, but it's kinda disgusting to drink at night especially with the foul mouth! But I did realize it help (hopefully the bacteria dies in the stomach!).
wmc: Thanks for the kind words. I'm hoping less than 8! It is still cooking... My first goal is getting rid of this thrush. Never had it, only had it after treatments and at bonkers on what to do about it besides popping pills.
I had thrush numerous times and happy to say meds usually zapped it in a day or two. Glad your radiation is behind you. I didn't have NPC but did have Cisplatin and it can be rough. Did your doctor give you an option? If so, I might get a second opinion. Tough decision. Best wishes. Just fyi...Ensure Plus has 100 extra calories than regular Ensure.
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Kenny
I'm so so glad that your treatment is done! Pretend that Handel's Messiah is playing in the background and ignore the tinnitus...Congrats! You did it!
As far as adjuvant goes...the Cisplatin and 5FU were recommended for my husband - who was stage 4 NPC, but we only made it through one treatment. The side eefcts were just more than his system could tolerate. He ended up hospitalized with neutropenia (even with a Neulasta injection). It is my understanding that the adjuvant is the "standard" recommendation. When it came time for us to decide the radiation onc recommended against it based on the severe side effects my husband experienced with the concurrent chemo, and the medical onc doc lobbied for it since it was the standard of care. Hindsight is 20/20 - i wish we hadn't done it, but everyone is different. Also I think from my husband's perspective it was important for him to try because he didn't want to be asking himself "what if" ? As it turns out our PET and scope were good, so it appears that the original treatment we received was effective.
Prayers that you come to a clear decision that you are comfortable with, and that you continue to recover speedily!
Barbara
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Not getting adjuvant chemoKenny- said:Adjuvant
Phrannie: I had S2 NPC. Should have mentioned that! I'll get my original post edited
Sounds like you went through the full package! That must have been rough, which is a mental cross road for me right now. Barry: Can you describe your treatment plan? Wow that is quite interesting that S4 they took out adjuvant, while mine is advocating adjuvant at stage 2! If you also don't mind sharing which Cancer center you're visiting. Mine is Oschner down in LA. By the way, how are you doing now?
MrsBD: I'm going to try that. That's interesting, I also realized that during meals. I have a bottle by my bedside at night, but it's kinda disgusting to drink at night especially with the foul mouth! But I did realize it help (hopefully the bacteria dies in the stomach!).
wmc: Thanks for the kind words. I'm hoping less than 8! It is still cooking... My first goal is getting rid of this thrush. Never had it, only had it after treatments and at bonkers on what to do about it besides popping pills.
for NPC is rare....I'm sure there are more people who didn't get it, I just can't think of any. I say hit it with all ya got first time around. At least give the adjuvant a try....if your body can't handle it, that's one thing....but just opting out is something I didn't allow myself to think about.........much (after the 2nd one, I was thinking of skipping the third, but when the day came....I knew I'd never forgive myself if it came back).
Now for the thrush. Taking the Diflucon works....most of the time. But for additional help in kicking that crap out of your mouth and throat....try Primadophilus Bifidus capsules. It's a probiotic that puts good bugs into your system. I've even cured mild thrush with this and skipped the anti-fungal all together so it's nice to have in your refrigerator when you need it.
Open the capsule and pour on your tongue....add some water, and just swish it around....hold it in your mouth....generally, mess with it in your mouth for 5 to 8 minutes (if you can).....then swallow it. Do it twice a day, and you will be amazed. Next time if you feel thrush coming on, grab the bottle out of the fridge and start right away, you might not even need the Diflucon.
I bought mine at the health food store....in the refridgerator section. I keep it on hand now always.
p
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hi
Hi Kenny,
I am so glad you are done! Although you are not done at least there is more light at the end of the tunnel I hope. I have Stage III Pyriform Sinus which is a HPC. 39 rads and weekly Cisplatin. They said after the PET I may have "salvage" surgery, horrible term, the neck dissection as necessary. I am going to ask about the adjunct chemo therapy. Not that I want it. I dont. Personally I would never be making it without the tube, about to start Isosource. You are strong. Karen
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Hi Kenny
Glad to hear you finished with the radiation, being you came this far you might as well finish the treatment all the way through. I know this is not what you want to hear but when you think about it you are at 95% why not do the other 5% to be 100% finish with all your treatments. To me the radiation was more damaging then the Chemo and I was never so happy as I was on the day I did my last radiation treatment.
Keeping you in prayer my friend
Tim
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I had an old poster aroundKenny- said:Adjuvant
Phrannie: I had S2 NPC. Should have mentioned that! I'll get my original post edited
Sounds like you went through the full package! That must have been rough, which is a mental cross road for me right now. Barry: Can you describe your treatment plan? Wow that is quite interesting that S4 they took out adjuvant, while mine is advocating adjuvant at stage 2! If you also don't mind sharing which Cancer center you're visiting. Mine is Oschner down in LA. By the way, how are you doing now?
MrsBD: I'm going to try that. That's interesting, I also realized that during meals. I have a bottle by my bedside at night, but it's kinda disgusting to drink at night especially with the foul mouth! But I did realize it help (hopefully the bacteria dies in the stomach!).
wmc: Thanks for the kind words. I'm hoping less than 8! It is still cooking... My first goal is getting rid of this thrush. Never had it, only had it after treatments and at bonkers on what to do about it besides popping pills.
I had an old poster around adjvant: http://csn.cancer.org/node/296778
My treatment was 33 radiation and concurrent chemo with cisplatin. I was treated in Seattle cancer care alliance (SCCA). While they recommend this, they actually reference to some recent Chinese research which proves adjuvant does not make much difference.
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Blood in Phelgm - Is it normal?
Thanks everyone for sharing your honest experience, and responses. Just met with my onco today, and quite admanant about me following through with the Cisplatin + 5FU. I'm mentally still stuck at this point, maybe because I haven't even recovered from the 'damage' yet and the thought of doing more chemo, I get emotional! Hopefully 2 weeks later (when I actually have to do it) I'll feel much better then to tackle the issue!
About 4 days ago, my (thick) phelgm started having taints of blood in them. It seems like everyone will have really thick phelgm, but did yours have blood in them? To be a bit more descriptive, it's not heavy bleeding, just streaks of blood which colors the phlegm pinkish red. Even to today (1 week after rads), it still have blood in it, and it looks like it's not going away anytime soon. The reason I was curious: Blood in phelgm was what took me to the doctor to detect NPC initially, and I haven't had any blood in phelgm for a while since the biospy. See-ing it again after rads, makes me worried!
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The blood vessels are very close to the surface ...Kenny- said:Blood in Phelgm - Is it normal?
Thanks everyone for sharing your honest experience, and responses. Just met with my onco today, and quite admanant about me following through with the Cisplatin + 5FU. I'm mentally still stuck at this point, maybe because I haven't even recovered from the 'damage' yet and the thought of doing more chemo, I get emotional! Hopefully 2 weeks later (when I actually have to do it) I'll feel much better then to tackle the issue!
About 4 days ago, my (thick) phelgm started having taints of blood in them. It seems like everyone will have really thick phelgm, but did yours have blood in them? To be a bit more descriptive, it's not heavy bleeding, just streaks of blood which colors the phlegm pinkish red. Even to today (1 week after rads), it still have blood in it, and it looks like it's not going away anytime soon. The reason I was curious: Blood in phelgm was what took me to the doctor to detect NPC initially, and I haven't had any blood in phelgm for a while since the biospy. See-ing it again after rads, makes me worried!
He blood vessels are very close to the surface and cac ge irritated and show some bleeding. If you have a hard cough is can sho some trace blood. I recomend you take a photo with your phone and save it. This way you can show or even email the photo to the doctor and he can see what you are seeing. Small light traces should not be of much concern, but it is always best to let your doctor know.
Bill
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My boyfriend had 2 adjuvant chemo
He was stage 3 NPC and was prescribed 3 adjuvant chemo, but the side effects were so severe that he was admitted to ED after the 1st one. He had to change the chemo to carboplatin + 5FU during the second session, and didn't finishe the last one.
He had lymph nodes recurrence 6 months out of treatment, or probably the treatement didn't kill these cells. So we don't know if the adjuvant chemo made any difference.
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No adjuvant chemo
Hi Kenny.
I was diagnosed stage 2 NPC. Chemo oncologist recommended 3 cisplatin plus adjuvant with concurrent daily 7 weeks of radiation.
like you I did not want the additional adjuvant chemo. Before treatment starts, I voiced my concern with the oncologist and we agreed that the adjuvant chemo will be put off pending scan results after the completion of radiations and 3 cisplatin (every 3 week).
CT scan and PET scan were good so did not do additional chemo. Almost 2 years out and all negative according to all blood tests and scans.
No cancer and healing continues to improve at snail pace but once in a blue moon the healing kicked up a notch.
2013 diagnosed with stage 2 NPC
Hope that was helpful.
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thanks for sharing!Purplemountain said:No adjuvant chemo
Hi Kenny.
I was diagnosed stage 2 NPC. Chemo oncologist recommended 3 cisplatin plus adjuvant with concurrent daily 7 weeks of radiation.
like you I did not want the additional adjuvant chemo. Before treatment starts, I voiced my concern with the oncologist and we agreed that the adjuvant chemo will be put off pending scan results after the completion of radiations and 3 cisplatin (every 3 week).
CT scan and PET scan were good so did not do additional chemo. Almost 2 years out and all negative according to all blood tests and scans.
No cancer and healing continues to improve at snail pace but once in a blue moon the healing kicked up a notch.
2013 diagnosed with stage 2 NPC
Hope that was helpful.
Thanks for sharing the comments everyone. purplemountain: Mind if I ask a few things:
1) How long did you wait for your PET/CT? 3 months later? It must have been a rather big decision for you to defer the treatment, but probably made easier if your oncologist was supportive.
2) What were you looking for in the blood tests? Was it EBV DNA? This is interesting because I may request that as part of my surveillance, but I heard because it's specialized that they need to send to e.g. mayoclinic the insurance sometimes challenge payment.
3) Which treatment center were you treated at?
Thanks for sharing again.
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Treatment and follow up testsKenny- said:thanks for sharing!
Thanks for sharing the comments everyone. purplemountain: Mind if I ask a few things:
1) How long did you wait for your PET/CT? 3 months later? It must have been a rather big decision for you to defer the treatment, but probably made easier if your oncologist was supportive.
2) What were you looking for in the blood tests? Was it EBV DNA? This is interesting because I may request that as part of my surveillance, but I heard because it's specialized that they need to send to e.g. mayoclinic the insurance sometimes challenge payment.
3) Which treatment center were you treated at?
Thanks for sharing again.
Hi Kenny.
I don't remember how long for them to take a scan of me. It was either 3 or 5 months for CT scan then another 3 months for PET scan.
as for deferring adjuvant chemo, I would not have made it through after my last cisplatin had they gave me another chemo session.
The blood tests were looking for cancer marker. Yes there is a substance in the blood that indicates cancer but is not specific to type of cancer. Everyone has it at very low level which is normal. Concern when that number is high.
I received treatment at USC hospital. It seems regardless of where treatment is rendered, it is standard for NPC to get 3 cisplatin and daily dosage of radiation 33-37 times. Unless the person is unable to tolerate the cisplatin, Doctor will change up on chemo. Adjuvant chemo is usually recommended for later stage I think from 3 on but don't hold me to it.
no problem Kenny.
will do my best to answer any question you have got from my experience in this ordeal. It is a marathon and I have a head start on you.
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Hi KennyKenny- said:thanks for sharing!
Thanks for sharing the comments everyone. purplemountain: Mind if I ask a few things:
1) How long did you wait for your PET/CT? 3 months later? It must have been a rather big decision for you to defer the treatment, but probably made easier if your oncologist was supportive.
2) What were you looking for in the blood tests? Was it EBV DNA? This is interesting because I may request that as part of my surveillance, but I heard because it's specialized that they need to send to e.g. mayoclinic the insurance sometimes challenge payment.
3) Which treatment center were you treated at?
Thanks for sharing again.
I did my first PET scan about a year after my first treatment. But on the second treatment they had me doing them every 4 to 6 months, I think is it mostly up to the doctor doing the treatment how often they should be done. On the bleeding you might get some being all the tissue is damaged from all the radiation but it should not last very long. If you are concerned about it give your doctor a call and get it checked.
Take care
Tim
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240mgglend04 said:how many chemo med?
Kenny,
Good day. Same with me im done with my weekly chemo 6 session & 37 rad. I was diagnosed T2N0M0. May i ask how many chemo drug used to treat you?
Hey Glen,
Congratulations for getting over the first phase! I did 240mg/m2 in total; split over 6 weeks. I did not do the last chemo (the last week of my radiation) as I was feeling pretty beaten up by then. The full treatment would have been 280 mg/m2.
But I'm starting adjuvant next week on a 80mg/m2 cisplatin + 5FU every 3 weeks. Are you doing the same? Your condition is very similar to mine T2N0M0.
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