Recently diagnosed with Nasopharyngeal cancer (Please advice)

Nancyrm
Nancyrm Member Posts: 1
edited March 2018 in Head and Neck Cancer #1

Hello everyone. My mother (51 y) was diagnosed with nasopharyngeal carcinoma (early stage 2, according to the radiation oncologist) last month. We started her treatment 2 weeks ago. Her treatment plan consists of 35 rads, 3 chemo (cisplatin) every 3 weeks and then the oncologist said something about 96 hours chemo after she is done with everything(she is going to discuss this later once my mother is done with the last chemo).  So far the side effects she is experiencing are mouth sores and throat pain when she swallows and sneezes and occasional fatigue. She is eating quite alright (We try to give her 6 small meals/day). She occasionally complains of burning back pain on the left upper back and the left arm. We spoke to our PCP and she said it might be because of the side effects of chemo and her gastritis. She has chronic gastritis/GERD. I am just having wild thoughts that the cancer has spread or something (I am really hoping its not that though). After her first chemo, she had a delayed reaction hence she did not take it well. For 4 days she had nausea and vomitting. That made her lose 3 pounds :( We were trying so hard to not make her lose any weight. She was back to her normal self after a week. 

Is there anyone who knows when the serious side effects might occur for radiation? Does it get worse in a few weeks time? My mother keeps asking me but I do not know what to tell her. 

It will be her 3rd week of radiation tomorrow. The radiation oncologist did not explain to us anything apart from saying she will be 90% cured and that there are like less than 5mm non specific (there was faint activity) but could potentially represent tumor bearing nodes (bilateral). He did not explain to us anything so I had to ask for the pet scan result but I was still confused. 

Also, is there a way we would know whether my mother is responding to the treatment well or whether her tumor is shrinking? (ct scan/mri during treatment?) I hardly see the doctor around so I can't even ask him :( I would really appreciate if someone who have gone through this similar diagnoses could share their experiences or if anyone could shed some light on the NPC cancer itself. My mother worries so much and that makes me so stressed. I actually took a family leave from work for 3 weeks but I might be quitting my job (I am an RN) to take care of my mom full time. Since none of my family had a history of cancer, everyone is so worried for my mother. And it really does not help how in my culture we associate cancer with death. I have to comfort and reassure everyday that she will win the battle. Thank you for taking the time to read this. Have a good week ahead :)

Comments

  • Aanchal Kanodia
    Aanchal Kanodia Member Posts: 20
    #2
    Hi,

    Hi,

    I think we are sailing on the same boat except my mom has tongue C. She had a successful surgery and is going through radiation. So far not good. We are three weeks into it and she is not taking it well. I fear if this is her situation now what do we have in store in the future. The problems that she is facing include fatigue, immense depression, loss of taste, stiffness in the neck, problems swallowing, loss of appetite, loss of weight, body pain, burning in the skin, coughing and the worst of all nausea and vomiting. On bad days which are usually alternate days we literally have to sit with a bin because she keeps throwing up. It's heart-wrenching to see her like this and now we are considering stopping the treatment altogether.  I just dont know how to help her anymore

  • corleone
    corleone Member Posts: 312 Member
    #3
    Last treatment for

    Last treatment for Nasopharyngeal Carcinoma (NPC) was done 5 years ago.

    I was T2N2 (stage III), 47 years old, treated with concurrent radiation (35 fractions 70 Greys) and cisplatin (2 rounds, day 1 and day 22, the 3rd not administered due to toxicity). After 1 month “vacation” I had adjuvant carboplatin and 5FU, for 3 months. The 5FU was given via a portable pump, continuous infusion over 5 days (and nights).

    Please check the superthread (the first thread posted on the forum) for a list with side effects and how to address these; please be aware that most are for base of tongue SCC cancer and similar, but the treatment is relatively similar.

    To your questions. The answers are not really what you want to hear, BUT always remember I am 5 years post treatment, to share my experience, and things improve, although slower than you want.

    When the serious side effects might occur for radiation? Does it get worse in a few weeks time?

    Unfortunately it will get increasingly worse after the first 3 weeks of radiation. The side effects ramp up rapidly, and the worst will be a week before and another week AFTER finishing the radiation (of course, with individual variations, but that was my experience). Sore throat, dry mouth, no taste (actually it’s worse than that, the taste is horrible), are the most prominent. These will improve VERY slowly, over months. I had surgically inserted a so called gastric tube (not funny) to help me take liquids and food, as I was not capable to eat enough (due to pain and lack of taste). The most important thing to remember during this time is to keep swiping/drinking water, not necessarily for hydration (which is important), but also to keep deglutition in shape (one can “forget” how to swallow, if constantly avoiding anything to do with drinking or eating).

    Also, is there a way we would know whether my mother is responding to the treatment well or whether her tumor is shrinking? (ct scan/mri during treatment?)

    The only way to know that is using nasal endoscopy (visual inspection), and imaging (MRI, CT scans, and/or PET scans). My case was different, I had a large lymph node at the neck, I was able to feel how it was shrinking after each cisplatin treatment.

    Regarding cisplatin: this is very toxic for kidneys – it requires hydration before and after treatment. I had IV infusion with saline solution before each treatment. It also damages the hearing, an audiogram is recommended before and after treatment. And is very emetogenic (nauseating) so the doctors should give her powerful anti-nausea medication just before, and a few days after treatment. Also bloodwork is done before each treatment, to make sure the blood cells are within limits (these are effected as well).

    Although now it’s late, it makes a difference if this is treated at a large center, with oncologist experienced with this type of cancer.

    Also, forget about alternative treatments for a while, until after she finishes the treatment. These may interfere with the treatment.

    The list with side effects and remedies is long, keep asking specific questions, and you will get answers from many who went through this.

     

  • Bay Area Guy
    Bay Area Guy Member Posts: 619 Member
    #4
    I'm on the kidney cancer

    I'm on the kidney cancer board most of the time, but I saw your post highlighted at the top of the page.  In 2009, my brother-in-law was diagnosed with NPC, stage 4A.  His treatment was administered at a combination of the UCSF Cancer Center (for radiation therapy) and San Francisco General Hospital (for chemotherapy).  Radiation was done five days a week for a period of three months.  Chemo was once a month.  At the end of this regimen, he wore another chemo device for about a week.  I'm not sure of that because, while my wife and I were with him every day of the radiation and chemo treatments, we had a planned three month trip that we could not cancel during that last period.  At the end of the treatment, his tumor was gone and subsequent MRI's have determined that the cancer has not returned.

    During the treatment phase, he would have periodic MRI's (about one a month if memory serves), and weekly doctor visits would analyze the the tumor by nasal probe.

    The side effects he had during treatment were pretty harsh.  He had very intense vomiting on a regular basis, both from the radiation treatment and from the chemo.  His appetite was gone and he had quite a bit of trouble swallowing.  It was difficult to get a lot of nutrition into him because of that, but through a combination of persistence, a lot of begging, and some yelling, we managed to get him through the treatment.  As the effects of the radiation and chemo drugs waned, his appetite returned.

    He has two other side effects that seem to be permanent.  He has had some hearing loss in one ear, and he also has persistent nerve pain on the side of his jaw where the radiation therapy was targeted.  The tumor was either on or adjacent to the nerve there and, as a result, was damaged.  Repeated visits to pain management doctors haven't been able to come up with the magic combination of medications to ease the pain.  Ufortunately, the side effects of the pain medications are often worse than dealing with the pain as his reactions to them are often very bad from a personality view.  He gets very combative in those circumstances.

    But it's been eight years since his treatment ended and there is no sign of recurrence or of any kind of spread, so the base treatment appears to have been successful.

    Besst wishes for your mom and as someone who was a caregiver during the treatment phase, make sure you find some time for yourself and the rest of your family during this time.  It's stressful and getting some private time will help keep you sane.

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