Finished treatment Dec12/11, how I'm doing now...
RogerRN43
Member Posts: 185
I was never given a stage but I think it would be T1N2M0. Primary in L tonsil, L lymph node involvement, HPV+. L tonsillectomy Sept21/11. IMRT 35 and Cisplatin week 1,4,7 mid Oct through to Dec12/11.
Looking back, treatment was a blur. I had a followup appt with my RO Jan13/12. My stomach tube was removed, hadn't used it for 2 weeks.
I am off the liquid supplements, I eat a variety of foods, most of my meals are "wet". If I try to eat dry stuff, it has to be chased with fluids. My throat hurts very little after I eat now. I'm guessing my taste is 50%. Weighed myself yesterday and I am only 4 lb under before I was diagnosed. I never thought the mucus and stuffy runny nose would go away, it's all gone. I posted about a white pinhead nodule on my tonsil bed, it's gone. I posted about a white sore on the left side of my tongue, radiation side, it's healed pink. I luckily escaped other mouth sores. I was also worried about coughing up blood tinged mucus and that subsided (I read that was common from rad'd throat tissue). I had some occasional tingling in my right hand, that seems to be rare now.
My issues are dry mouth, slight hearing loss, I fatigue easy but getting better every week. Hair on the lower back of my head is growing back slow. If I let my hair grow, it looks like a bad hair cut so I maintain a military cut where it's shaved on the sides and back.
All in all, my "new" normal at this point is pretty good.
I still have a small sliver where my L lymph node was and my RO firmly believes it's scar tissue. I get a CT in early Mar/12, then another one 3 months later to decide neck dissection. I wish PETs were covered in Canada, they're not, too many false positives. I may go to Buffalo and pay for one 6 months out.
I frequent other forums and there have been a few survivors where their PETs are NED and their small residual node(s) are scar tissue, calcification. I used to wonder if my Canadian treatment was enough, I read about others getting induction chemo, Erbitux, different agents. I was pleased to read that the founder of OCF, a 12y tonsil cancer survivor, believes in the tried and true rads+Cisplatin combo over anything new. He is not a doc, he refers to himself as a science geek. I see that he is well respected and well versed in his research. He also refers to one of the most reputable articles in the NEJM which concludes HPV+, non-smoker tonsil 5y survival at 80%. Brings me comfort and hope.
I still get thoughts of "why me", worrying about recurrence, dental issues in the future, uncertainty about my mortality, my family and seeing my 2 little girls grow up. I get depressed at times and I think I'm going to start some counselling. As I feel closer to my previous normal and adjusting to my new normal, those thoughts and sometimes feeling down are going away, especially as I get out of the house more and do normal things like grocery shop with my family, attend my kids' activities, and get together with friends. I am starting to enjoy and value each day with my family. I will probably go back to work in a couple of months and that will add another sense of normality.
I know scanxiety will always be with me. I have read on OCF if there is a recurrence, 80% are within the first year, 15% in the 2nd year. From what I understand, HPV+ SCC have low recurrence rates but there are no guarantees. If I get past 2 years I will be elated. For now, I live for today.
I would like to add this site has helped me tremendously. I can't thank all of you enough for the wonderful support.
Best wishes to all.
Roger
Looking back, treatment was a blur. I had a followup appt with my RO Jan13/12. My stomach tube was removed, hadn't used it for 2 weeks.
I am off the liquid supplements, I eat a variety of foods, most of my meals are "wet". If I try to eat dry stuff, it has to be chased with fluids. My throat hurts very little after I eat now. I'm guessing my taste is 50%. Weighed myself yesterday and I am only 4 lb under before I was diagnosed. I never thought the mucus and stuffy runny nose would go away, it's all gone. I posted about a white pinhead nodule on my tonsil bed, it's gone. I posted about a white sore on the left side of my tongue, radiation side, it's healed pink. I luckily escaped other mouth sores. I was also worried about coughing up blood tinged mucus and that subsided (I read that was common from rad'd throat tissue). I had some occasional tingling in my right hand, that seems to be rare now.
My issues are dry mouth, slight hearing loss, I fatigue easy but getting better every week. Hair on the lower back of my head is growing back slow. If I let my hair grow, it looks like a bad hair cut so I maintain a military cut where it's shaved on the sides and back.
All in all, my "new" normal at this point is pretty good.
I still have a small sliver where my L lymph node was and my RO firmly believes it's scar tissue. I get a CT in early Mar/12, then another one 3 months later to decide neck dissection. I wish PETs were covered in Canada, they're not, too many false positives. I may go to Buffalo and pay for one 6 months out.
I frequent other forums and there have been a few survivors where their PETs are NED and their small residual node(s) are scar tissue, calcification. I used to wonder if my Canadian treatment was enough, I read about others getting induction chemo, Erbitux, different agents. I was pleased to read that the founder of OCF, a 12y tonsil cancer survivor, believes in the tried and true rads+Cisplatin combo over anything new. He is not a doc, he refers to himself as a science geek. I see that he is well respected and well versed in his research. He also refers to one of the most reputable articles in the NEJM which concludes HPV+, non-smoker tonsil 5y survival at 80%. Brings me comfort and hope.
I still get thoughts of "why me", worrying about recurrence, dental issues in the future, uncertainty about my mortality, my family and seeing my 2 little girls grow up. I get depressed at times and I think I'm going to start some counselling. As I feel closer to my previous normal and adjusting to my new normal, those thoughts and sometimes feeling down are going away, especially as I get out of the house more and do normal things like grocery shop with my family, attend my kids' activities, and get together with friends. I am starting to enjoy and value each day with my family. I will probably go back to work in a couple of months and that will add another sense of normality.
I know scanxiety will always be with me. I have read on OCF if there is a recurrence, 80% are within the first year, 15% in the 2nd year. From what I understand, HPV+ SCC have low recurrence rates but there are no guarantees. If I get past 2 years I will be elated. For now, I live for today.
I would like to add this site has helped me tremendously. I can't thank all of you enough for the wonderful support.
Best wishes to all.
Roger
0
Comments
-
Congrats Roger
on finishing your treatment and posting and sharing some of your experiences. OCF is a good place for information also, for those that don't know , that's the oral cancer foundation which has a great website as well. I encourage you to seek some counseling as it helped me immensely. You will continue to get stronger and slowly improve. Bravo!!!!0 -
Welcome to your "New normal"
From your description, it seems that you have a good perspective on what you have gone through so far and what you are facing in the future--at least what I can tell from my own experience. I developed osteoradionecrosis (ORN) and am now dealing with jaw and tooth issues from that--about 10% of people who get treated with radiation get ORN. The positive news is that the 5-year survival rate for HNC/BOT patients is very good--around 80%, as you know. The downside is that many people develop immediate and/or latent complications from the chemo + rads, and there is no way to predict what those complications will be and when they might kick in. The best advice I can give is to listen to your body, and ask questions when things come up that don't feel right. If you stay alert, you can minimize the side effects and adjust to the "New normal" of life as a HNC/BOT survivor.
Mike0 -
2 steps forward, 1 step back!!osmotar said:Congrats
Glad to read your doing so well...best wishes for continued health.
Linda
At least that's how it's been going for me!! Happy to hear you are doing well!!! Getting back to work definitely helped me keep my mind occupied. I'm actually planning on starting my M.S. in Nursing in March. I am 17 months out! God bless!
Charles0 -
Glad to hear you are doing
Glad to hear you are doing well. I don't really spend any time worrying about recurrence. If it happens I will deal with it the best I can. As for whether cisplatin is the the best.....well who knows for sure but it has been the go to drug for a long time. I think the new head to head trials with erbitux will shed some light on this subject and it sure would be nice to see some improvement in treatment for this cancer. I for one am glad I went the erbitux route because of the long term side effects of cisplatin and the fact I kind of like new things but everyone probably thinks whatever treatment they had was the best one.
I had a PET last week and will get my results on Monday. I really don't expect any surprises.
I assume your taste buds are returning, mine are about 60% and saliva is about 50%. My biggest issue at the present time is that my teeth have become super sensitive. Not sure what to do about that since I don't have any cavities.
Regards,
John0 -
Roger
So glad to read your update. I've been wanted to email you, but I didn't want you to think I was being a nag.
You are really doing great. Glad you are feeling better and settling into your new normal.0 -
0.O
Nothing to see here.0 -
My husband has 15 more rads
My husband has 15 more rads left and 4 more weeks of chemo once a week. Its good to know you are done and are getting better. I started tube feeding him now since he can't eat. I can't wait until he is through with this and where you are at today. Congrats!!!!0 -
Rogerdonnahamblin said:My husband has 15 more rads
My husband has 15 more rads left and 4 more weeks of chemo once a week. Its good to know you are done and are getting better. I started tube feeding him now since he can't eat. I can't wait until he is through with this and where you are at today. Congrats!!!!
Your email could have been written by any of us survivors at 30-60 days post treatment. You are normal buddy, trust me. Or maybe I should say you are "new normal"...
I am 22 months post treatment and the anxiety has gotten much less than when I was 2 months. Trust me Roger, the treatment works and there are many, many here to prove that...Keep the positive attitude and you'll be o.k., even NED soon..
All the best,
Steve0 -
Sounds Goodhawk711 said:Roger
Your email could have been written by any of us survivors at 30-60 days post treatment. You are normal buddy, trust me. Or maybe I should say you are "new normal"...
I am 22 months post treatment and the anxiety has gotten much less than when I was 2 months. Trust me Roger, the treatment works and there are many, many here to prove that...Keep the positive attitude and you'll be o.k., even NED soon..
All the best,
Steve
I've been reading your journey here since I joined a few months back. Knowing the suffering you went through and everything else it's really good to hear you're getting back on track. From here on in it will get better. Once you have a few NED scans the anxiety will hopefully leave you.
Heal Well,
Tommy0
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