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Joined: Feb 2004
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Wow, gita. Such clarity and eloquence. Thank you for sharing and communicating things that often defy transmission. That being said, ya'all must be Irish in that a good fight seems to buoy your spirit as evidenced by your sister's recent improvement in her condition. I applaud her decision to stay in the fight and the support that those who love her provide.

My very best wishes...

-Brett


Base of Tongue SCC. Stage IV, T1N2bM0. Diagnosed 25 July 2003.
Treated with 6 weeks induction chemo -- Taxol & Carboplatin once a week followed with 30 fractions IMRT, 10 fields per fraction over 6 more weeks. Recurrence October 2005.
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Dear Gita,

I am in awe of your command of emotion!

I think you should consider publishing your experience. I know many would benefit. It could be the ultimate gift to others facing the same decisions.

Love,
Mandi


Husband diagnosed with stage III tonsil and floor of mouth cancer in August 2002. Three rounds of chemo/42 RAD treatments. Upper right lung lobectomy in March 2003. (Benign)
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gita Offline OP
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update:

tonight she's getting the last bag of chemo... she'll be able to go home in a couple of days, hopefully... i hear she's been handling it better both physically and emotionally...

christine, i think you were right: she's doing a lot of spiritual work here... kudos to all who face challenge with strong heart... kudos also to her oncologist who is a wise doctor and genuinely cares about her well-being and considers it from multiple angles... kudos to all who give and let others give them love...

brett, we're not irish, but thank you for the compliment...

much love to you all, and healing and peace. i am keeping a/wake for positive energy...

gita


sister diagnosed 11/03 SCC maxilla keratenizing stg IV T1N1Mx; 4-7 positive lymph nodes; dissection 12/03 left upper pallette removd; radiaton left side 35 sessions 2/04-4/04; recurrence same side 4/04; chemo began 5/04 incl cisplatine, 5fu, taxotere
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I hope your sister is doing better. I understand how much of an impact support and a positive attitude can do in a situation like this. I am writing you actually because I think my father is going through a similar situation as your sister and I am rather confused with the options that were given to us, so I thought perhaps to get another point of view from
Someone going through this. Last September my father was diagnosed with cancer in
His cheek and it had spread to 2 lymph nodes. He had them removed and went through
Radiation and yesterday we found out that the cancer has returned in the same area and is in the T1 stage. The doctors did not sound too positive and I

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Unfortunately, chemo alone has not been very successful as a curative agent. What happens is even if the initial response is good, the cancer eventually develops a resistance to the chemo and starts growing again. Radiation or radiation + chemo is not an option in your father's case? Make sure you get the opinion of a multi-disciplined team from a major cancer center.

Best wishes,

-Brett


Base of Tongue SCC. Stage IV, T1N2bM0. Diagnosed 25 July 2003.
Treated with 6 weeks induction chemo -- Taxol & Carboplatin once a week followed with 30 fractions IMRT, 10 fields per fraction over 6 more weeks. Recurrence October 2005.
Joined: May 2004
Posts: 80
gita Offline OP
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dear swati,

i got your private mail. please consider this a response to that as well.

i personally am not in the position to give any specific advice or forecast about your father. having said that, as i understand and in concurrence with brett's post, chemo will not "cure" the cancer at this stage. in fact there are no "cures" per se for cancer, but it is possible to treat cancer in such a way that it will go in remission. this is the best case scenario which often involves surgical, medical and radiation oncology combined, and its realization depends on the type and stage of cancer as well as the individual response of a patient to treatments.

with regards to your father's situation, i would imagine that similar to my sister's case, at best, chemotherapy at this stage will slow down the growth. actually, in my sister's case, the cancer grew in spite of chemo, hence our panic. in my sister's case also, surgery was not an option. in fact, even if it was medically possible, my sister would not want to undergo surgery again. her current treatment plan is to continue with radiation + chemo, with the understanding that most likely it will only buy her time, hopefully with some comfort and quality.

in other words, we were not told at any stage that her cancer was curable. it's important that you know that when the recurrence is in previously treated areas, treatment options become very limited. in my sister's case, the reason they can give her follow-up radiation is because the first time it was not given at full dose. that became apparent only after the new radiation oncologist studied the records from the previous facility. your father's case may be different.

i agree with brett that you should discuss the possibility of radiation+chemo with your father's oncologist. it's probably wise not to take "no" for an answer unless the opinion is based on your father's specific treatment records. in my experience, doctors often talk statistically and give you a general ruling. it is left up to you to ask specific questions and demand careful and individualized assessment and answers.

if after careful assessment it becomes clear to you that the risk and side-effects of treatment may outweigh the good they may do, then your father would have to make a decision on whether or not to continue treatment and what type of treatment to choose. again, in my experience, in these situations the doctors don't tell you what to do but give you a set of options and leave it up to you to decide.

also in agreement with brett, getting second opinion is crucial at this stage before you plan further action. depending on where in california you are, you may have a comprehensive cancer centre near you. you can find a list of these at:
http://cis.nci.nih.gov/fact/1_2.htm

some centres can do consultation even if the patient cannot go there directly (i believe SFU is one of them). ask them to give you a specific list of documents they need. it makes it go faster if every piece of info they *might* need is there. (i found myself working like an archivist pulling together my sister's records from different facilities.)

finally, i'm very sorry about your father's illness and the difficult times you're experiencing now. what i found in our situation when we went through this stage was that the shock, disappointment and grief were so heavy that we became focused on a loss that had not yet happened, and thus lost sight of the fact that we still had some ways to go. positive attitude by itself does not cure cancer, but it will help you open up a space for thinking about all aspects of the situation and find what is best for you. also, i am a firm believer that real healing starts with understanding and accepting what is happening in the body and releasing it of unnecessary stresses. this is a work that takes some spiritual and emotional cleansing and a shift in orientation. because of the intrusive nature and conventions of western medical approach, we are used to thinking that we have to "fight back" the disease and thus risk subjecting ourselves to treatments that may not really be helpful when we look at the whole picture. but sometimes you need to also give yourself a break and make time for reflection, regardless of what you end up doing next. this is where we were with my sister before she decided to continue with the treatments. had it not been for this period of reflection, the positive energy would not have resurfaced. there is a qualitative difference between saying positive things and being positive in how you face life. to get to the latter stage, we need to make time to reflect on the road we've come thus far. i know how difficult it is to give yourself the permission to take this kind of time under the horrible stress that you're thrown into. but keep this in mind as something to do. the time may come once you get the second opinions and have a clearer picture.

i send you, your father and your family good thoughts for healing and peace.

be well.

gita


sister diagnosed 11/03 SCC maxilla keratenizing stg IV T1N1Mx; 4-7 positive lymph nodes; dissection 12/03 left upper pallette removd; radiaton left side 35 sessions 2/04-4/04; recurrence same side 4/04; chemo began 5/04 incl cisplatine, 5fu, taxotere
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A recurrence in the original site so soon after treatment is very serious. I think that the doctors are trying to prepare you for the worst.

I wanted to address something that Gita said about "not receiving the full dose". What that means is his sister probably received 72 cGy of radiation, which is a full dose in itself. It is typically lethal for most cancers that will respond to radiation.

The maximum dose possible is about 82 cGy total and the additional fraction (around 9 cGy) is called a "boost". Depending on what stage her tumor was originally at (and other risk factors as well) would dictate whether she gets the boost or not. Getting the full 82 cGy has risks of its own and they prefer limiting the radiation if possible.

Many times they use the additional radiation (the boost) to irradiate areas other then the tumor site itself such as lymph nodes that may be suspicious. So the actual tumor site may indeed not receive any additional radiation.

Brett is correct about chemo, especially with head and neck cancers. Like Brett also stated, if he is not being seen at a comprehensive cancer center already, I would get a second opinion from them.

I am very sorry to hear about your fathers situation.


Gary Allsebrook
***********************************
Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2
Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy)
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"You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
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gita Offline OP
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gary,

thanks for clarification and info re radiation. this has been a mystery for me because i did not get to read her radiation treatment summary or talk to the new radiation oncologist after he looked at my sister's radiation films. i had assumed that the reason they could irradiate again was because in actuality she had only gotten 20-some out of the 35 sessions she was scheduled for. there were several cancellations because of equipment problems but they had not made up for these. so i thought she had not hit the maximum dose because of that.

also a clarification: my sister's recurrence is in two spots: a new tumor in the throat area where she had not received radiation and new growth in the surgery bed in the face and upper pallete. we were told that while radiation could help with the new tumor, it probably would not do much for the previously irradiated areas. they don't have a radiation plan yet. i'll post it when i find out.

be well.

gita


sister diagnosed 11/03 SCC maxilla keratenizing stg IV T1N1Mx; 4-7 positive lymph nodes; dissection 12/03 left upper pallette removd; radiaton left side 35 sessions 2/04-4/04; recurrence same side 4/04; chemo began 5/04 incl cisplatine, 5fu, taxotere
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Hi Gita,
I had delays because of equipment downtime but they just added the days.

I didn't realize that your sister only completed slightly over half of her treatment protocol. 20 out of 35 is cause for questioning for sure. There must be other reasons why they apparently abandoned treatment.


Gary Allsebrook
***********************************
Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2
Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy)
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"You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
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Swati,

As Gita suggests, many comprehensive cancer centers will do a second opinion conultation via telephone if you ask. MD Anderson in Houston is one of the best and they did a telephone consultation with my doctor before I started treatment. I faxed pathology reports and scan results and they reviewed everything within 24 hours. I found the information on their website and told them I was on a fast schedule and they did everything immediately. In my case, I didn't want to change the schedule I was on but I wanted peace of mind.

I am sorry you are experiencing your father going through this and know now difficult it must be for you. Be sure and ask the medical team for any answers you want or need. Do not stop asking until you are satisfied you understand the answers. They will assume you know or understand when you stop asking.

Ed


SCC Stage IV, BOT, T2N2bM0
Cisplatin/5FU x 3, 40 days radiation
Diagnosis 07/21/03 tx completed 10/08/03
Post Radiation Lower Motor Neuron Syndrome 3/08.
Cervical Spinal Stenosis 01/11
Cervical Myelitis 09/12
Thoracic Paraplegia 10/12
Dysautonomia 11/12
Hospice care 09/12-01/13.
COPD 01/14
Intermittent CHF 6/15
Feeding tube NPO 03/16
VFI 12/2016
ORN 12/2017
Cardiac Event 06/2018
Bilateral VFI 01/2021
Thoracotomy Bilobectomy 01/2022
Bilateral VFI 05/2022
Total Laryngectomy 01/2023
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