Jaime Tourgeman added 5 new photos.
October 27 at 3:36pm ·
July 26 ·
I have a story to tell you, that may safe someone's life some day.
This rare cancer in America and most countries is diagnosed mostly at advance stages . Cancer doesn't shrink , this one wax and wane . It's very aggressive and sneaky .
Most doctors are fooled because there are no symptoms and in most cases it doesn't show on blood, X-rays , hard to identify on Ct scan . They grow small but spread like wild fire . Most that get it, are from Asia or Africa , smokers , drinker and eat salty fish . I am not Chinese , don't drink or smoke and very seldom eat fish , yet 3 of my brothers were diagnosed with this rare cancer . 2 died and one is under treatment as I am.
My primary doctor, DR. Carlos Luistro, suspected what I had even before it was diagnosed to be carcinoma . He saw my lymph node on my left side of my neck . They were firm and hard and putting my family history made him very concern . While all test were negative, he always remained concern.
My ENT Noubar Ouzounian, made an exam that later biopsy was concluded to be cancer . Met with my radiation oncology, Dr Winston Lien, and with the use of scope , he
Confirmed that I had advance NPC and it appears to be locally . Today I had the pet scan , and results with be available in 3 days .
An agreesive cancer treated with agreesive chemo and radiation .
This is where I am now . If it has spread, I have at most ??? years, if it has not spread , I could be cured .
If you know someone that has enlarged lymph on nodes on your neck , dont delay seeing your doctor . The problem, most may not be able to diagnose it at early stages . Get second opinion.
Soon I will have my treatment and will keep you updated in the months to come . I am confident I will be fine , but I hope by me sharing this, a life may be spare.
I thank Dr Luistro and Dr Ouzounian for their Wisdom and experience for their urgency and concern..I am in great hands now with my Ocology Dr. Winston Lien .
Had my first cycle of chemo on 08/10 followed by 4 days with the pump. Had my ups and down with side effects . Today I feel fine . It takes 7-10 before chemo flushes out . Next cycle 9/1 and 9/21
I am getting the best of care from Kaiser Permanent hospital .
So far I have not lost my hair and may not , good taste is ok so far but my hearing on the right side is 75% gone . Today I feel great
Cancer spread to neck on both sides and above collar bone.Thats good. ( NO SPREAD BELOW THE NECK IS MUCH EASIER TO
CONTROL ) Lost half of my hair and my taste is gone..most taste like carboard, water like sewer...But these are my least of my problems.
Today I had my second cycle of chemo
So far so good . Side effects have been minimum . Fatigue at times but other than that , feeling good . From so much liquid my stomach is blown . I think I gained 10 pounds but by tomorrow most will go away .
Has been up and down recently , the more chemo the more side effects
9/21 the last cycle of aggressive chemo , follow by radiation/ chemo
Saw my ONC today . Was amazed how well I looked . With my aggressive treatment an elephant would come to his knees is what he said .
I have one more cycle of chemo followed by 2 hours of chemo/ radiation every 6 weeks . Tumors have shrunk to almost normal , and that's good .
I asked him to tell me what are prognosis ?
His answer was very much appreciated .
He said that my cancer is very rare in America and data is really not that complete or reliable .
Most that are at stage 4b
60 plus , died within 2-3 years of heart attack
. Treatment do damages certain parts of your body .
Since most died of heart failure , its not certain then how good data would have been . 70 % of my my age range and with my stage , cancer returns within 3 years . His advice ;
Don't focus on the cancer or how long I am going to live, but rather on making each day count and fill the bucket list as if I was going to live another year .
I am at ease, not concern with anything really . I have made my mind to do exactly what my doctor had said .
To you I say , live and worry less . I also know that I am very lucky that 71 had seen the world and lived a full life so far . I am grateful that I am not 40 with little children to support while working , or a 6 years old child with this illness .
I am ok .
Being happy is an obligation to life even if you only have a couple .
Ps today they did an ultra sound where my PICC
Is located . Blood cloth was found . Picc was removed and replacing next week .
No treatment of chemo for the last 4 weeks . Feeling fine . The month of Sept and part of October was not easy . Chemo can do damages to your body.
I had to go to urgent care 2 times , had two blood clots one on each arm due to PICC .
Was rushed to KP hospital for 24 hours . Fatigue and low white counts , blood clots were a concern . Hours before my discharged , a very nice internal medicine doctor
Spoke to me and basically said that at my age of 71, more treatment may be more harm than good . The aggressive chemo treatment, may have been too much. Gave me option I should consider , one to simply live the remaining time in comfort
Rather than more treatment.. Most doctors have no clue about this rare cancer..I have stage 4b, but its treatable if it didnt spread. And it didnt..NELOW COLLAR BONE.
Had my pet scan a few days ago , and tomorrow in the morning we will get the results . A very important day . Will continue with more information , tomorrow.
Met with my Rad. Oncology today, DR Lien... Good news....Tumors shrunked 90%.
I will start 7 weeks of radiation 5 days a week and once a week 6_7 hours of chemo. Treatment will be brutal, with a few side effects, but this is the price you pay for life. I now have 70% chances of being totally cured if all treatments goes well..and It will.
They were amazed how well I looked and how well I handle the treatments so far..For a 71, thats surprising.
Anyways, I am getting, hopefully, a good chance for longer life.
Good attitute, good diet, and excercise, are important.
Remember, " Being happy is an obligation to life".
Had a pet scan today and the mask. Treatment starts on the 14 of Nov . Chemo once a week and 5 days a week 7 weeks radiation .
Today , I resumed my treatments after a break of 5 weeks . Feeling super good .
Today I had a busy day with 5.5 hours of chemo followed by radiation . All went well , I am reminded of some difficult times effects , just like when I had my 3 months off chemo . I handled it with minor issues .
Hopefully this time I will do as well .
Saw many nice people waiting to be called for their treatment. Young and old , rich and poor, all Ethnics
And all Hoping to beat this bad illness . The young and married with little children, is what disturbs me most. Makes me feel lucky with no problems .
Till further days./ Side effects normally appears after 4_10 days after the treatment.....not looking forward to that..One day at a time..Lookinf forward when its all over.