Stage 4 metastisized cancer survivors
Comments
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Our Experience
My wife had surgey and rads for myoepethelial carcinoma of the parotid gland in 2007. In 2009 they found mets in the lungs and liver. All known treatment options since have had no effect but last year and this, she's been in clinical trials at MD Anderson in Houston. Disease is still progressing but not as fast as it was with no treatment. She still works every day that she's not in for chemo. So far she's experienced minimal symptoms from both treatment and disease.0 -
stage 4
I am 17 months away from the end of treatment for stage 4 squamous cell carcinoma. It had metastasized to bilateral lymph nodes on my neck. Treatment lasted about 6 months. It was in the words of my oncologist, "Hitting it with everything we've got". I was very sick for another 6 months. I feel nearly 100%. I've gone back to work full-time. I've lost quite a bit of taste and saliva. Survival does involve some trade-offs, it beats the heck out of the alternative.0 -
About stage 4lexipm said:stage 4
I am 17 months away from the end of treatment for stage 4 squamous cell carcinoma. It had metastasized to bilateral lymph nodes on my neck. Treatment lasted about 6 months. It was in the words of my oncologist, "Hitting it with everything we've got". I was very sick for another 6 months. I feel nearly 100%. I've gone back to work full-time. I've lost quite a bit of taste and saliva. Survival does involve some trade-offs, it beats the heck out of the alternative.
My Cancer was Nasopharyngeal carcinoma and from what the doctors told me it was a good stage 4 and it only spread to right side to one lymph node. So I had biospy surgery done to remove that cancer lymph node. I had chemo (with cisplatin and 5FU) for 4 months then radiation done for 7 weeks 5 days a week and I was finished on August 2010 but found out I had NPC in feburary 2010 but didnt start treatments to march due to insurance problems.
When I was going through cancer treatments I was working part time as a call technician for a local isp but soon as I started radiation I could not work anymore so now I am on disability intill december of this year and they will look at my medical records to see if I am still disabled from this nasty cancer.
Just a heads up you might have TMJ/TMJD after radiation treatments if your cancer is in your neck area.
because that is what I am dealing with right now along with dry mouth and neck and shoulder problems probably due to radiation treatments.
so far as my ENT doctor and chemo sees I am cancer free but scheduled to get my PET scan done sometime in oct. I have to PET scans done every 6-8 months for next 3 years to make sure this Nasopharyngeal carcinoma does not come back at all.
By the way I am only 25 and married for a 1 year and 3months and no kids yet.0 -
Thank you for responding.timreichhart said:About stage 4
My Cancer was Nasopharyngeal carcinoma and from what the doctors told me it was a good stage 4 and it only spread to right side to one lymph node. So I had biospy surgery done to remove that cancer lymph node. I had chemo (with cisplatin and 5FU) for 4 months then radiation done for 7 weeks 5 days a week and I was finished on August 2010 but found out I had NPC in feburary 2010 but didnt start treatments to march due to insurance problems.
When I was going through cancer treatments I was working part time as a call technician for a local isp but soon as I started radiation I could not work anymore so now I am on disability intill december of this year and they will look at my medical records to see if I am still disabled from this nasty cancer.
Just a heads up you might have TMJ/TMJD after radiation treatments if your cancer is in your neck area.
because that is what I am dealing with right now along with dry mouth and neck and shoulder problems probably due to radiation treatments.
so far as my ENT doctor and chemo sees I am cancer free but scheduled to get my PET scan done sometime in oct. I have to PET scans done every 6-8 months for next 3 years to make sure this Nasopharyngeal carcinoma does not come back at all.
By the way I am only 25 and married for a 1 year and 3months and no kids yet.
Thank you for responding. God Bless you, especially being 25. Tony is 42 and we have been married for 17 years and I want 17 more! He has had tmj but it has gone away and he suffers from dry mouth terribly. He is also still unable to eat! I wish you the best and many years with your wife!0 -
Thank you for sharing. Tonylexipm said:stage 4
I am 17 months away from the end of treatment for stage 4 squamous cell carcinoma. It had metastasized to bilateral lymph nodes on my neck. Treatment lasted about 6 months. It was in the words of my oncologist, "Hitting it with everything we've got". I was very sick for another 6 months. I feel nearly 100%. I've gone back to work full-time. I've lost quite a bit of taste and saliva. Survival does involve some trade-offs, it beats the heck out of the alternative.
Thank you for sharing. Tony is unable to eat due to dry mouth and trouble swallowing. Can I ask what treatment you received? I am thrilled to hear about survivors!0 -
Thank you for sharing. I ampoppop57 said:Our Experience
My wife had surgey and rads for myoepethelial carcinoma of the parotid gland in 2007. In 2009 they found mets in the lungs and liver. All known treatment options since have had no effect but last year and this, she's been in clinical trials at MD Anderson in Houston. Disease is still progressing but not as fast as it was with no treatment. She still works every day that she's not in for chemo. So far she's experienced minimal symptoms from both treatment and disease.
Thank you for sharing. I am so glad she is not sick. I pray that her treatment works! It's awesome that she feels well enough to work. Can I ask what treatment she is receiving. We will be looking for a clinical trial if the treatment he is receiving does not work. I have found no clinical trials for head and neck in FL yet so I have a feeling we will be traveling and I hear MD Anderson is great. Thanks again and I pray she goes into remission. Robyn (Tony's wife)0 -
Cancertonyharr said:Thank you for sharing. Tony
Thank you for sharing. Tony is unable to eat due to dry mouth and trouble swallowing. Can I ask what treatment you received? I am thrilled to hear about survivors!
Hubby Dx stage 4 larynx cancer in 2009, After completing Rad and Chemo (Cisplatin) 7 weeks he was clean. Until Dec 2009, They watched it and decided to do Chemo again, I know Carboplitin but not all the other drugs with it, they did 8 rounds every three weeks. They shrank the tumors 35-45% , But after the Chemo stopped the tumors are growing. Here we are waiting for two months (April 21) to see what to do next.
He has been a trooper.
Jennie0 -
Clinical Trialtonyharr said:Thank you for sharing. I am
Thank you for sharing. I am so glad she is not sick. I pray that her treatment works! It's awesome that she feels well enough to work. Can I ask what treatment she is receiving. We will be looking for a clinical trial if the treatment he is receiving does not work. I have found no clinical trials for head and neck in FL yet so I have a feeling we will be traveling and I hear MD Anderson is great. Thanks again and I pray she goes into remission. Robyn (Tony's wife)
The trial she is currently in consists of chemo treatments every day one week and off the next. It's MDA trial # 2010-0483. Last year she was takiing an oral med in another trial (2008-0228) until her disease progressed beyond the parameters of the study. Heres a link to the MDA Clinical Trial page. You can search several ways including by trial number.
http://www.mdanderson.org/patient-and-cancer-information/cancer-information/clinical-trials/clinical-trials-at-md-anderson/index.html0 -
SPREAD
I too was a stage 4 B SCC of Right Tonsil with Mets to 19 Lymph Nodes. I am post treatment since 10-21-10 and first PET and physical exam revealed No Evidence of New Disease. My Docs indicate if my cancer does spread in the future, it will end up in the Lungs.
Hope this helps and best of luck and many prayers to you and your family.
Mike0 -
4 with mets
Stage 4 NPC with mets to both lymph nodes,one below brain stem, mets to sternum, lumbar and sacrum (hot spots on PET/CT). I like to think the ones to bone were just old climbing injuries but they all went away after chemo so the docs think they were mets. Either way; finished treatment Dec. 28 and doing well today.
Bob0 -
How is he?zinniemay said:Cancer
Hubby Dx stage 4 larynx cancer in 2009, After completing Rad and Chemo (Cisplatin) 7 weeks he was clean. Until Dec 2009, They watched it and decided to do Chemo again, I know Carboplitin but not all the other drugs with it, they did 8 rounds every three weeks. They shrank the tumors 35-45% , But after the Chemo stopped the tumors are growing. Here we are waiting for two months (April 21) to see what to do next.
He has been a trooper.
Jennie
Hi Jennie,
How was his scan?0 -
spreadluv4lacrosse said:SPREAD
I too was a stage 4 B SCC of Right Tonsil with Mets to 19 Lymph Nodes. I am post treatment since 10-21-10 and first PET and physical exam revealed No Evidence of New Disease. My Docs indicate if my cancer does spread in the future, it will end up in the Lungs.
Hope this helps and best of luck and many prayers to you and your family.
Mike
We share a similar diagnosit. 4BSCC of Left Tonsil with Mets to 14 Lymh Nodes of 70 that were removed.We are only 1 week past treatment so don't have much time under our belt. I think our first PET scan is schduled for July and I pray for NED. So, if the cancer recurrs in the first 2 years, is it usually in the lungs? Then what is the prescribed treatment? Do you have to remove part of the lung or tap it with more chemo/radiation? Hopefully, it won't go there!0 -
Sorry for asking, but whattimreichhart said:About stage 4
My Cancer was Nasopharyngeal carcinoma and from what the doctors told me it was a good stage 4 and it only spread to right side to one lymph node. So I had biospy surgery done to remove that cancer lymph node. I had chemo (with cisplatin and 5FU) for 4 months then radiation done for 7 weeks 5 days a week and I was finished on August 2010 but found out I had NPC in feburary 2010 but didnt start treatments to march due to insurance problems.
When I was going through cancer treatments I was working part time as a call technician for a local isp but soon as I started radiation I could not work anymore so now I am on disability intill december of this year and they will look at my medical records to see if I am still disabled from this nasty cancer.
Just a heads up you might have TMJ/TMJD after radiation treatments if your cancer is in your neck area.
because that is what I am dealing with right now along with dry mouth and neck and shoulder problems probably due to radiation treatments.
so far as my ENT doctor and chemo sees I am cancer free but scheduled to get my PET scan done sometime in oct. I have to PET scans done every 6-8 months for next 3 years to make sure this Nasopharyngeal carcinoma does not come back at all.
By the way I am only 25 and married for a 1 year and 3months and no kids yet.
Sorry for asking, but what does TMJ/TMJD stand for?
Thanks
Jason0 -
That is great news. Myadventurebob said:4 with mets
Stage 4 NPC with mets to both lymph nodes,one below brain stem, mets to sternum, lumbar and sacrum (hot spots on PET/CT). I like to think the ones to bone were just old climbing injuries but they all went away after chemo so the docs think they were mets. Either way; finished treatment Dec. 28 and doing well today.
Bob
That is great news. My father has stage 4 and it is in 4 lymph nodes that we know of, on the roof of his mouth, and at the very base of his tongue. He goi=es in for surgery on 5 May and starts radiation 4 to 5 weeks after that. i hope and pray that some day in the not so distant future that the Doc says," You are NED". Keppin my fingers crossed.....0 -
LUNG TREATMENTrobinleigh said:spread
We share a similar diagnosit. 4BSCC of Left Tonsil with Mets to 14 Lymh Nodes of 70 that were removed.We are only 1 week past treatment so don't have much time under our belt. I think our first PET scan is schduled for July and I pray for NED. So, if the cancer recurrs in the first 2 years, is it usually in the lungs? Then what is the prescribed treatment? Do you have to remove part of the lung or tap it with more chemo/radiation? Hopefully, it won't go there!
Sorry for the delayed reply. If I should have a re occurance into the lung, I could have surgery and chemo. Surgery would depend where tumor(s) are and how big. No more option for radiaition as I had my lifetime dose already with the first treatment.
Do not assume this will spread at all. My ENT and Chemo Doc's only say based on past experiences with other patients that the Lungs would be the next destination.
Right now I am NED and do not think of any spread what so ever.
Best!!
Mike0
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