Need help for NPC

suresh22
suresh22 Member Posts: 7
in Head and Neck Cancer #1

A close friend of mine, who is in his early fifites, was recently diagnosed with late stage 2 NPC. He has completed 7 weeks of radiation and concurrent CT which was given two days after the first radiation session; 60 mg of cisplatin for the first three weeks, 50 mg cisplatin for week 4 and 5, 40 mg for week 6 and 7. His chemo dosage was reduced to servre mustocities which also made him push back his chemo.  His chemo Doc has told him that he have to go through 3 more cycle of chemo; 80 mg cispltain for first week and 5 Fluiriuracil for the last two cycle next week( one month after the completion of his radiation due to him being too weak and having lost 18 kg from 68 kg to 50kg). However he does not want to  the last three cycle of chemo since he is certain that the doctor overdose him on cisplatin and that he almost died. Furthermore when we confront the doctors about his situation and the diffculities, the chemo doctor says its due to the raditiaon and the radiation doctor says its due to the cehmo drugs. So we are confused if he should do the last three cycle.

 

Please.I would be very grateful if anyone would advise me and tell me about the treatments they underwent for NPC.

 

Comments

  • Klingels
    Klingels Member Posts: 78
    edited September 2017 #2
    Chemo and radiation for tonsilar cancer

    My husband had 3 infusions of Cisplatin every 3 weeks, and 35 radiation treatments. He had a very rough time the week of the infusions. His last Cisplatin treatment was delayed due to low white blood cell count. During the course of treatment he was very nauseous. He ended up on intravenous saline drips to keep him hydrated since he couldn't keep anything down. Because food and hydration became so difficult, he ended up with a feeding tube and finally TPN, nutrition fed intravenously. My husband is 6 weeks post treatment, still using the feeding tube for food and hydration, and the pain is finally diminishing. This course of treatment has been very harsh. There have been many days where he wondered if the agony would end. This week he finally turned a corner and seems to be on the mend. I don't know if this helps, but this is what our journey has been.

  • corleone
    corleone Member Posts: 312 Member
    #3
    Carboplatin

    I am 5 years post treatment for stage 3 NPC. After concurrent chemo and radiation I also had 3 (monthly) cycles with carboplatin and 5 FU. Cisplatin was replaced with carboplatin (similar drug, less toxic) due to ototoxicity (hearing loss). 5FU was very inconvenient because was administered over 5 days (using a portable pump). But overall, the toxicity was bearable. Carboplatin is generally better tolerated, maybe your friend should discuss this with the medical oncologist.

  • Ladylacy
    Ladylacy Member Posts: 773 Member
    edited September 2017 #4
    Cisplatin

    My husband went thru 35 radiation treatments and 3 cisplatin treatments.  The chemo was given every 3 weeks but the second chemo treatment was divided because of the problems he had with the cisplatin and he never had the third cisplatin.  He had to have a blood tranfusion due to the low blood count from the cisplatin.  He didn't have much problem with nause and was already on a feeding tube and relied on it.  Then when he had to go thru a second round of radiation and chemo they used carboplatin every week he was undergoing radiation.  The dosage was depended about his weight and he didn't have the problems he had with cisplatin.  

  • SuzJ
    SuzJ Member Posts: 427 Member
    edited September 2017 #5
    Cisplatin

    Wether or not he should get more, depends on the bloodwork they do at least once a week? That will tell them how his organs are dealing with it. If they say kidney damage, then I'd argue against.

    I had 2 cisplatin, I didnt get the 3rd because my kidneys couldnt do it.

  • suresh22
    suresh22 Member Posts: 7
    #6
    dosage

    Thank you for the instant replies and it has made me much at ease knowing that there are people out there who have beaten this.

     

    i realise Balancing the dosage of chemo is a fine line as i witness first hand how hard it was on him and at times looked like he would not make it and that is why he strongly does not want to go with the adjuvant chemo.i am not sure if the dosage was high but he weugthed at 68 kg when he started treatment. My friend did not have much side effects like what i have read. However he had muctosis and after he was finished with his 35 radiation seesion, he had to be hospitalze for pains to his chest which hte doctor atrributed to infection due to the mucus.  The problem right now is that his blood pressure has not got back to normal and its always low.

    May i know the dosage of the chemos and what stage they were diagnosed with and how you and ur partners are coping. My firends stage was diagnosed as late stage 2(T2N1) i really hope that you and your partners are doing well. Cancer is a diseases that i would not wish upon my worst enemies.

    Thank you

  • phrannie51
    phrannie51 Member Posts: 4,716
    edited September 2017 #7
    I had NPC....Stage 3

    I had 3 large dose Cisplatin (every 3 weeks) with 35 radiation treatments....after rads were over I had another 3 large dose Cisplatin, and 3 fanny packs of 5FU (Fluiriuracil) every three weeks....he is getting a smaller dose and therefore getting it more often.  This is the common treatment for NPC.

    It is common also, for the rad doc to point at the oncology doc, and vice versa :).....the combination of radiation and chemo for NPC, for the extra 3 treatments is hard....trust me, it's the combo, not just one or the other.

    p

  • psychedoutca
    psychedoutca Member Posts: 16
    #8
    It's the combo

    Phrannie is right it is the combo. The thing about NPC and the nature of the beast, is you have to ask yourself the question of what would it mean if I didn't go through with the last treatments? what they don't often tell you at the start is what we are all talking about with the cisplatin, 5-FU, and docetaxil combo with Radiation is that in some cases you only get one shot at it, particularly due to the possible necrosis from the rads, or toxicity or newly developed allergy to a platinum chemo. If you only have one shot, you may want to ask yourself if you are nearly done why stop the treatments now? I am no physician but my husband is and he has NPC SCC stage IV metastatic recurrent, and we have done it all. At 50's there still a lot of life left to live.  The side effects are horrible but the time, that's really what this is all for right? 

  • suresh22
    suresh22 Member Posts: 7
    #9
    Afraid of chemo again

    we are all afraid that the chemo will be too toxic for him, seeing how he reacted during the concurrent cct. And seeing that this time round  the dosage is going to be double has make us all uncertain. He is looking to fly over to singapore to have a second option from the Doctors there since npc is said to be very prevelant there. However right now he is still too weak and I am afraid that the advijant chemo won't be effective as it will be too late when he recovers. We are already one month Post radiation. i wish we had known about singapore eailer before the radiation began. It's so rare here. Could Anyone please tell me when the window of opportunity for advujant chemo ends for it to be effective. I would be really grateful. Thank you

  • psychedoutca
    psychedoutca Member Posts: 16
    #10
    Singapore

    We looked into Singapore as well, since it's so prevalent there, let us know how that consult goes. they recently had a large conference there where our radiation oncologist who specializes in NPC spoke at, anxious to hear how that will go for you. If it is positive it may be worth the trip for us. One thing I forgot to mention was the level of cisplatin that they initially gave my husband was subsequently reduced because he struggled with the toleration at max dose, could you guys go for a decrease in dosage with same result? 

  • Andy13460
    Andy13460 Member Posts: 115
    edited September 2017 #11
    Cisplatin and Chemo Radiation

     

    I was on Days 1, 22, and 43: Cisplatin 100mg/m2 and always feel guilty after reading what some people go through. Apart from a slight loss of hearing and tinnitus post treatment during the administrating of treatment I had minimal side effects each time and no nausea. I assume the delivery protocols are similar for everyone now. Fluids, Mannitol,  anti-sickness, Cisplatin & then fluid on slow infusion overnight plus 3 days of steroids for anti sickness. I thought it was the radiation that caused my mucositis but Idid find this. The majority of oral cancer patients receiving chemotherapy in combination with radiation will experience at least some degree of mucositis. When caused by chemotherapy, mucositis is usually due to the low white blood cell count; when caused by radiation, mucositis is usually due to the necrotic and inflammatory effect of radiation energy on oral mucosa.

     

  • suresh22
    suresh22 Member Posts: 7
    #12
    You all have been so helpful

    Thank you all for taking your time to give me advise.  Can I ask how the experience with the Adjuvrnt chemo ( ciLatin and 5 fu) . Could u guys eat anything through the mouth  My friends mouth is all healed and clear post one month radiation and we are thinking of dyeing a petscan first before starting on the advujent chemo. The reason why his adjuvent chemo was pushed back for so Long is that after the concurrent treatments, he was too weak. And doc say to come in one months time to do it. is it normal for adjuvant chemo to be pushed back that much??

  • suresh22
    suresh22 Member Posts: 7
    #13
    Adjuvant chemo

    hello again could anyone tell me when they had adjvurnt chemo. Did you have it right after the raditiaon or like in my Friend case, had it late . Please 

  • Sandraw
    Sandraw Member Posts: 40
    edited September 2017 #14
    Adjuvant Chemo

    Hi, I had 7 weeks or 33 radiation treatments, weekly low dose cisplatin Feb-March 2016, started Adjuvant wear home fannie pack May for a week and in June for a week, I was so sick with mucosititis, dehydration, needed 2 blood transfusions after May chemo Doc wouldn't let me have the third one scheduled for July. I was stage 3 NPC, see ENT for scopes every 3 months, Oncologist every 6 months and annual pet/CT next scan will be in Dec. Thankful to God, family, Docs, friends was NED last scan and ENT said it looked great last scope.  I think the wait is to try to build your body back up give it a break before the heavy guns. 

  • Kenny-
    Kenny- Member Posts: 99 Member
    edited September 2017 #15
    Adjuvant

    suresh,

    i did adjuvant. i similarly challenged my oncologists on the idea. 

    the data suggests the jury is still out there. different oncologists have differing opinion. in the end i took the advise that "if you can tolerate it, just do it". I tolerated only 2 cycles, and the third was a slight modification. 

    one suggestion is to do a EBV DNA PCR of the blood. Some oncologists have used this as a medical judegement if adjuvant should be done. But, theres not much data on relating adjuvant to DNA. hope i didnt confuse more, just sharing what I learned when faced with the same question research. 

  • suresh22
    suresh22 Member Posts: 7
    edited September 2017 #16
    Adjuvant

    Thanks everybody For ur input. My Friend did his MRI and it was clear. But the doctor push him to Go for three round of adjuvent just to make sure it doesn't come . however the blood work just came back and it says negative so we are thinking of Not continuing with the chemo. anyone with the same experience ??

  • donfoo
    donfoo Member Posts: 1,771 Member
    #17
    suresh22 said:

    Adjuvant

    Thanks everybody For ur input. My Friend did his MRI and it was clear. But the doctor push him to Go for three round of adjuvent just to make sure it doesn't come . however the blood work just came back and it says negative so we are thinking of Not continuing with the chemo. anyone with the same experience ??

    Why not follow doctor recommendation?

    Everyone agrees it is better to fight harder the first time than deal with recurrence. My team and I were all on the same page to put the most aggresive treatment on the first time around. At 4 years post all is good. 

    Not sure what blood work results indicate if any cancer remains but the chemo has a better chance of killing any remaining cancer cells than not doing it at all. 

    Cancer treatment is brutal, no dancing around it. If he can grind it out, get as much as is recommened by the experts. If you still have concerns, you could seek another opinion but that is not done often at this stage of treatment.

     

    Good luck

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