newly diagnostic Nasopharyngeal stage3 -Update

Tuongvi
Tuongvi Member Posts: 20
in Head and Neck Cancer #1
Hi everyone,
Frist, I want to say thank all of you here for your encourgements, supports, prayers and helpful information. I want to stop by and give a update about my husband treatment at Johns Hopkins. The first chemo session started last wed feb 23 and ended Sunday. He was given both 5FU and Cisp. His body is getting a rest now for 2 weeks before the 2nd session begins. The side effects are tired and burning feeling in the tommy(acid). Anti-acid Zantac doesn't seem to help, but over all he handles the treatment well. My question is what to expect the second session? will it get better or worse? Oh, I forgot to mention the tonsil that they removed was neg ( no cancer cells detected) and he was tested + for HPV. Should I be worried about getting cervical cancer? Any help is appreciated.

Comments

  • Kent Cass
    Kent Cass Member Posts: 1,898 Member
    #2
    Tuongvi
    Great to hear he's got the treatment started, and is handling it well. 2nd session will likely be a little worse than the first, as I understand it. I didn't get his kinda delivery, but others have, and I think they speak of it getting a little worse, but bearable. So, if it wasn't in the tonsil, does that mean he's unknown Primary? I was/am, and am doing okay 27-months later. And thanks for the update.

    kcass
  • Hondo
    Hondo Member Posts: 6,636 Member
    #3
    Kent Cass said:

    Tuongvi
    Great to hear he's got the treatment started, and is handling it well. 2nd session will likely be a little worse than the first, as I understand it. I didn't get his kinda delivery, but others have, and I think they speak of it getting a little worse, but bearable. So, if it wasn't in the tonsil, does that mean he's unknown Primary? I was/am, and am doing okay 27-months later. And thanks for the update.

    kcass

    Hi Tuongvi
    Great to hear he is doing well and getting a break. Like Kent said yes the second one will be a little worse and so will the third but he will get through it. On the HPV if you want you can get tested for it but a lot of Woman have it and never get cancer from it.

    Wishing you both the best
    Hondo
  • Tuongvi
    Tuongvi Member Posts: 20
    #4
    Hondo said:

    Hi Tuongvi
    Great to hear he is doing well and getting a break. Like Kent said yes the second one will be a little worse and so will the third but he will get through it. On the HPV if you want you can get tested for it but a lot of Woman have it and never get cancer from it.

    Wishing you both the best
    Hondo

    Thanks Kent and Honda for
    Thanks Kent and Honda for your reply. I have a feeling it is going to be rough, too. It is cancer that we are dealing with so it won't be easy and that is expected right? Yesterday he was totally out but he feels much better this morning so I guess it is normal to have up and down feel when you are fighting this monster.
    Wishing all well
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #5
    Great...
    I had similar treatment, also tonsils and one tumor on the same side of the throat. Also had nine weeks in three cycles, sounds like you are in for the same. I had Cisplatin, taxotere and 5FU which went through the pump and the implanted port.

    I don't think any of the three was worse than the others. Main thing that is easy to do is become de-hydrated, so that's one to watch. My wife used a technique the nurses showed her called "tenting". The would gently pull up or pinch the skin on the backs of my hands. If the skin returned to its shape quickly I was getting enough fluids. If it tented up or stayed in the plled up position for a little while, I wasn't getting enough fluids.

    De-hydration mad me feel sick and want to just be left alone and sleep. The worse I felt, the more I wanted to sleep and the more sick I felt.

    After that, I had an additional seven weeks of weekly Carboplatin and 35 daily rads.

    I got hiccups frequently, can't remember what they gave me for those. But for indegestion and acid reflux, they prescribed Protonix, which I still use occasionally.

    Thoughts and Prayers,
    John
  • james chambliss
    james chambliss Member Posts: 70
    #6
    Skiffin16 said:

    Great...
    I had similar treatment, also tonsils and one tumor on the same side of the throat. Also had nine weeks in three cycles, sounds like you are in for the same. I had Cisplatin, taxotere and 5FU which went through the pump and the implanted port.

    I don't think any of the three was worse than the others. Main thing that is easy to do is become de-hydrated, so that's one to watch. My wife used a technique the nurses showed her called "tenting". The would gently pull up or pinch the skin on the backs of my hands. If the skin returned to its shape quickly I was getting enough fluids. If it tented up or stayed in the plled up position for a little while, I wasn't getting enough fluids.

    De-hydration mad me feel sick and want to just be left alone and sleep. The worse I felt, the more I wanted to sleep and the more sick I felt.

    After that, I had an additional seven weeks of weekly Carboplatin and 35 daily rads.

    I got hiccups frequently, can't remember what they gave me for those. But for indegestion and acid reflux, they prescribed Protonix, which I still use occasionally.

    Thoughts and Prayers,
    John

    I had NPC Stage 3 and had
    I had NPC Stage 3 and had Rads first then chemo. It did get worse for me each time i had chemo. Hydration is the key, and even then it's rough. I had days where i would pass out from lack of hydration. I lost 52 lbs from the loss of appetite. It is going to be rough, but i guess if you get good results, it is worth it. Be patient, he will get down a lot and not want to do much. My prayers are with you both.


    Regards,

    James
  • Goalie
    Goalie Member Posts: 184
    #7
    Tuongvi said:

    Thanks Kent and Honda for
    Thanks Kent and Honda for your reply. I have a feeling it is going to be rough, too. It is cancer that we are dealing with so it won't be easy and that is expected right? Yesterday he was totally out but he feels much better this morning so I guess it is normal to have up and down feel when you are fighting this monster.
    Wishing all well

    Local help
    Hi Tuongvi,

    First off, good luck to you both. I have every hope that you will make it through well. Second, it happens that I also live in Olney. As a new survivor, I would be happy to meet with you both to give you what encouragement I can. We could meet for coffee which, by the way, I am just beginning to taste well again and to enjoy.
    Third, my credentials: I am now three months past radiation (9 weeks of it) and chemo and a month past neck dissection. Tonsil (removed) and lymph node cancer. HPV+ Now PET/CT negative, lymph node biosies negative or dead cancer. I can sure tell you what I went through and what we did about it. My wife was my savior in all of this.
    Fourth, you should know that Goergetown U Hospital has now opened offices at Montgomery General right there in Olney. It was too late for me to do my treatment there though, if I started it again (Heaven forbid!) I would. You could, however, get hydration there as I did. It is so much more convenient than Hopkins and the people are wonderful.

    I hope this helps, Doug
  • seenanN
    seenanN Member Posts: 24
    #8
    Update
    Hi Tuongvi
    The second session will be tougher, more side effects are expected depending on how high of the dose is. For gas and acid if Zantac does not work then try another over the counter remedy such as gasX etc. Like Doug, I live near you and my wife is also the one that holds me in one piece. My wife and I would be happy to meet you both.

    seenanN
  • wifeforlife
    wifeforlife Member Posts: 189
    #9
    seenanN said:

    Update
    Hi Tuongvi
    The second session will be tougher, more side effects are expected depending on how high of the dose is. For gas and acid if Zantac does not work then try another over the counter remedy such as gasX etc. Like Doug, I live near you and my wife is also the one that holds me in one piece. My wife and I would be happy to meet you both.

    seenanN

    Tuongvi
    My husband had a fellow throat cancer patient .... a remision patient ... visit him during his treatment. It helped my husband a lot... and it helped the gentlemen visiting him too! (that was unexpected)
    March 6th my husband will be 1 yr "NED" (no evidence of desease} They had dinner together two weeks ago!.
    You should take these kind strangers up on their offer if your husband is at all interested.
    Wife
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #10
    wifeforlife said:

    Tuongvi
    My husband had a fellow throat cancer patient .... a remision patient ... visit him during his treatment. It helped my husband a lot... and it helped the gentlemen visiting him too! (that was unexpected)
    March 6th my husband will be 1 yr "NED" (no evidence of desease} They had dinner together two weeks ago!.
    You should take these kind strangers up on their offer if your husband is at all interested.
    Wife

    Excellent Advice
    I have met and had lunch or dinner with a few from here. I have also visited one or two during their chemo sessions....it is very therapeutic, both for them and myself...great advice.

    Best,
    John
  • Tuongvi
    Tuongvi Member Posts: 20
    #11
    Goalie said:

    Local help
    Hi Tuongvi,

    First off, good luck to you both. I have every hope that you will make it through well. Second, it happens that I also live in Olney. As a new survivor, I would be happy to meet with you both to give you what encouragement I can. We could meet for coffee which, by the way, I am just beginning to taste well again and to enjoy.
    Third, my credentials: I am now three months past radiation (9 weeks of it) and chemo and a month past neck dissection. Tonsil (removed) and lymph node cancer. HPV+ Now PET/CT negative, lymph node biosies negative or dead cancer. I can sure tell you what I went through and what we did about it. My wife was my savior in all of this.
    Fourth, you should know that Goergetown U Hospital has now opened offices at Montgomery General right there in Olney. It was too late for me to do my treatment there though, if I started it again (Heaven forbid!) I would. You could, however, get hydration there as I did. It is so much more convenient than Hopkins and the people are wonderful.

    I hope this helps, Doug

    Would like to meet
    Doug,
    Now that I feel much better six week after treatment. I hijacked (with permission) my wife CSN account and thanks you all for provide a lot of comfort and useful information regarding to my treament to my wife. My wife has metioned you and SEENAN as our neigbors and oferred to meet with us. We would like an oppotunity to meet you and SEENAN. Just please let us know when and where. We are living three 1/2 mile from MGH.
    Thuy/Huong(Tuongvi)
  • seenanN
    seenanN Member Posts: 24
    #12
    Tuongvi said:

    Would like to meet
    Doug,
    Now that I feel much better six week after treatment. I hijacked (with permission) my wife CSN account and thanks you all for provide a lot of comfort and useful information regarding to my treament to my wife. My wife has metioned you and SEENAN as our neigbors and oferred to meet with us. We would like an oppotunity to meet you and SEENAN. Just please let us know when and where. We are living three 1/2 mile from MGH.
    Thuy/Huong(Tuongvi)

    Very glad
    Thuy/Huong(Tuongvi)
    Very glad for the update that you have been doing well and I can see where your strength comes from. I was NPC stage 4 met to lung, my tx lasted more than 5 months in 2004 and went back to work since then. We can meet in the week day evening, Sat or Sun and you can PM me by click "Connect and Communicate" page when you first login or click on the CSN help in the upper right corner for help.

    Seenan

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