FNHL

hildegard

Have not posted in a long time. Have been diagnosed with Fhl in 2004 and did 22 radiation therapy after surgery. That took out my submandibular gland out and in my left cheek.

Then I went to 2009 and had to do the right side and it came back in my bone marrow and abdomen. did 8 rounds of chemo  and zevalin. So have been in remission since.

I had a scan in August. And the Oncologist said I was fine. So he is not doing a scan this year .

I have Acid Reflux and take meds. I have been having some pain in my bronchial and sore throats. Now my ears are clogged and wondering if this is a warning to call my Oncologist. I can not seem to get any satisfaction with my internist. They referred me to a ent person and said my throat looked fine and I needed speech thereapy. So I laughed and left. Any advice for me would be appreciated.

Hildegard

 

givingrace

Hi Hildegard,
I would go into

Hi Hildegard,

I would go into Oncologist office and share all your concerns. If you get some stupid unsatisfactory answer.... cry,and cry loud. you need not be pushed away. I personally would beg,plead, and demand a PET scan. I had cancer activity threw out my whole lymphatic system in 2010. then did Rituxin , spent some time clean and clear then had cancer show up in my nasopharageal area (sp) . Apparently behind or very close to my voice box. The ENT Surgeon took biopsy back there and then I did Bendamustine,Neulasta,and Rituxin for 6 months and I have no activity now but will do two years of rituxin every 2 months for maintanance . My point? I don't think the back of my throat will ever be the same. I get dry very fast, I carry a glass of Ice and water or tea everywhere I go, Oh and can't forget the straw...lol. I am anxious at any pain discomfort or weird feeling. It gets tricky and sometimes we have intuition and sometimes our minds are our worst advocate. So take a really deep breath keep calling, setting appointments until your voice gets heard. Stay strong and NEVER GIVE UP.

 

hugs and prayers to you.

~GG~

hildegard

givingrace said:

Hi Hildegard,
I would go into

Hi Hildegard,

I would go into Oncologist office and share all your concerns. If you get some stupid unsatisfactory answer.... cry,and cry loud. you need not be pushed away. I personally would beg,plead, and demand a PET scan. I had cancer activity threw out my whole lymphatic system in 2010. then did Rituxin , spent some time clean and clear then had cancer show up in my nasopharageal area (sp) . Apparently behind or very close to my voice box. The ENT Surgeon took biopsy back there and then I did Bendamustine,Neulasta,and Rituxin for 6 months and I have no activity now but will do two years of rituxin every 2 months for maintanance . My point? I don't think the back of my throat will ever be the same. I get dry very fast, I carry a glass of Ice and water or tea everywhere I go, Oh and can't forget the straw...lol. I am anxious at any pain discomfort or weird feeling. It gets tricky and sometimes we have intuition and sometimes our minds are our worst advocate. So take a really deep breath keep calling, setting appointments until your voice gets heard. Stay strong and NEVER GIVE UP.

 

hugs and prayers to you.

~GG~

GG

Hi GG,

Thank you for your answer, I really appreciate it, you however sound like me. I carry water and ice also. And I can not eat without drinking a lot of water or I can not swallow it.

Have had sinus and clogged ear proplems. Had it in my bronchial and get pain there. No one seems to get to the bottom of it.

I am making an appointment to my Ent guy that did the surgery on my right side first of all to get checked out. I am tired of feeling bad. I really appreciat your answer to me. Hope you are doing well.

Hugs and prayers back to you. Hilde