| Joined: Sep 2009 Posts: 53 Supporting Member (50+ posts) | OP Supporting Member (50+ posts) Joined: Sep 2009 Posts: 53 | Hi guys, I'm Pleased to say my brother has helped save my life, he�s most amazing man, with sending me the money that the Bupa Insurance would not pay, what's the point of having Insurance if it won�t pay for all Illnesses, no wonder American people are being conned into believing there system of being controlled by big Drug companies is the best, when 47 million Americans can�t get treatment at all, what a joke, cant they see through these Drug Companies, it�s amazing to the rest of the western Countries.
As I am going to have to somehow go back to work, with this treatment, I will not be able to have a Peg, as I�m a Teacher, if I don�t, I will be out of a job, a home and the country I love to live in. Do you think I can manage to work with this treatment?
The doctor said I will not lose my hair how many of you guys lost their hair, do you think my throat will swell so I can�t eat or swallow or may be breath.
The doctor said I have to be 7 weeks having this treatment including one week in hospital what do you think the week in hospital is for did any of you have this.
Those he did not have a Peg did you find it ok to swallow and take in liquids ok.
Last edited by Teacher jon; 10-08-2009 06:21 AM.
"Base of Tongue Cancer", may be HPV cancer. swollen lymph nodes, half the tongue base Now T2/3 N2 MRI scan and simulation mask, 4 Chemo/35 rad of 35. Tumors gone. can eat. MRI April 19th , Nodes now all gone, was 6 cm, weight GAIN to 81 kg but found 2.1 grey area on MRI. Biopsy next.
| | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | Senior Patient Advocate Patient Advocate (old timer, 2000 posts) Joined: Sep 2006 Posts: 8,311 | Jon,
Don't get me started on our health care. There may be millions of people in the US without health care insurance but IMO most don't opt to pay for it and then jump on the bandwagon and scream when they need it. I have many, if not all, of my employees that play the lottery EVERY DAY throwing away as much as $20 A DAY and they won't buy health insurance of any kind. Then they get sick and they loin others complaining about the lack of available health care in the US. Even then we do have many programs that still give assistance to these people. IMOO (in my other opinion) we have far far far to many people in this country that don't want to work and feel somehow that just being here they are entitled to be taken care of by those of us that think it's our responsibility to take care of ourselves.
David
Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | | | Joined: Aug 2005 Posts: 307 Platinum Member (300+ posts) | Platinum Member (300+ posts) Joined: Aug 2005 Posts: 307 | I'm with you David...
Shelley
Caregiver to husband Ron. Throat Cancer. Finished 35 radiation treatments on 11/21/04. 8/2/11 small lesion on lower gum, laser Procedure to remove. 3/6/12 Doc. removed another lesion on outside of his neck. Did a skin graft from his chest to replace the skin on his neck. Went to Heaven on 6/24/12.
| | | | Joined: Sep 2009 Posts: 60 Supporting Member (50+ posts) | Supporting Member (50+ posts) Joined: Sep 2009 Posts: 60 | David; Where the hell was I supposed to come up with $850 per month for COBRA when I got laid off. Our health insurance in this country is a crime. We should be ashaimed that we are the only industrialized nation that allows insurance companies to make billions while letting people die. I now owe the hospital $70000 because I got laid off right before I was diagnosed.
Jon;
I had no PEG. Swallowing was very hard. Meals were quite a bit of work. I ate several small meals mainly because I would get tired from chewing and swallowing. My cancer was my tonsil, so I do not know how swallowing would differ for BOT.
I only lost hair where the radiain hit. My beard fell out, and I had a very strange hair line on the back of my neck.
Flip _________________________________ Age: 54 SCC Tonsil + 3 nodes Radiation and Carboplatin Treatment 4/1 - 6/7/2009 No surgery, no PEG Never smoked Drink socially (brew my own beer and love wine. A bottle of scotch lasts me a couple of years) CT 11/4/09 No sign of envolvement in Tonsil or nodes
| | | | Joined: Feb 2007 Posts: 1,940 "OCF across the pond" Patient Advocate (1000+ posts) | "OCF across the pond" Patient Advocate (1000+ posts) Joined: Feb 2007 Posts: 1,940 | Jon why does being a teacher mean you cant have a PEG?.It is just a short tube that tucks down your trousers.No one will know and you will have more of a chance of staying at work with it than without.
Liz in the UK
Husband Robin aged 44 years Dx 8th Dec 2006 poorly differentiated SCC tongue with met to neck T1N2cM0 Surgery and Radiation.Finished TX April 2007 Recurrence June/07 died July 29th/07.
Never take your eye off the ball, it may just smack you in the mouth.
| | | | Joined: Sep 2009 Posts: 60 Supporting Member (50+ posts) | Supporting Member (50+ posts) Joined: Sep 2009 Posts: 60 | Jon; The things that would have made it hard for me to work were, energy level and for a little over a month I could not speak above a whisper. If you can sit while teaching you can probably get by. I had to take time off because the only available work was an 8 hour drive away.
Flip _________________________________ Age: 54 SCC Tonsil + 3 nodes Radiation and Carboplatin Treatment 4/1 - 6/7/2009 No surgery, no PEG Never smoked Drink socially (brew my own beer and love wine. A bottle of scotch lasts me a couple of years) CT 11/4/09 No sign of envolvement in Tonsil or nodes
| | | | Joined: Jul 2008 Posts: 507 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jul 2008 Posts: 507 | Jon, The are really no restriction imposed by a PEG (unless you are a swimming instructor).
IMO, You probably have a better chance working through much of this is you get a PEG. Assuming no other complications (like intense nausea) the PEG can really simplify nutrition and hydration difficulties.
I don't think you will be able to work all the way through your treatment and the first recovery month, but you might make it through most of it.
I think TomoTherapy might make it a bit easier, but it still is really a roll of dice and individual response is an huge variable.
Letting you know, being a teacher, many of us lost our voice the last week of Treatment and for about a week after.
I have no idea why they plan to hospitalize you for a week. The only reason I was in the hospital was for surgery.
Don TXN2bM0 Stage IVa SCC-Occult Primary FNA 6/6/08-SCC in node<2cm PET/CT 6/19/08-SCC in 2nd node<1cm HiRes CT 6/21/08 Exploratory,Tonsillectomy(benign),Right SND 6/23/08 PEG 7/3/08-11/6/08 35 TomoTherapy 7/16/08-9/04/08 No Chemo Clear PET/CT 11/15/08, 5/15/09, 5/28/10, 7/8/11
| | | | Joined: Jan 2009 Posts: 253 Gold Member (200+ posts) | Gold Member (200+ posts) Joined: Jan 2009 Posts: 253 | David: I'll vote for you!!!  Sandy
Sandy 56, BOT SCC Biopsy 1/21/09 Stage 3, T3NXM0. Finished 3 cycle induction chemotherapy 4/7/09. (Chisplatin, 5-fu and Texotere). Re-staged 4/20/09,(very successful.) Will start Carboplatin/radiation 2 Gy/5 days/7 weeks (Tomotherapy) starting May 4th. Finished 6/22/09. OCF member/supporter
| | | | Joined: Jan 2009 Posts: 253 Gold Member (200+ posts) | Gold Member (200+ posts) Joined: Jan 2009 Posts: 253 | Jon: You will not lose all your hair if you are doing a combination of chemo (usually Cisplatin) and radiation. The only hair loss is on the back of your head at the base of your ears. This never grows back, but can be disguised by growing your hair longer int he back.
If you do Induction Therapy, you will lose your hair. It will grow back, but probably will be curly. It starts growing back almost immediately.
Sandyst
Sandy 56, BOT SCC Biopsy 1/21/09 Stage 3, T3NXM0. Finished 3 cycle induction chemotherapy 4/7/09. (Chisplatin, 5-fu and Texotere). Re-staged 4/20/09,(very successful.) Will start Carboplatin/radiation 2 Gy/5 days/7 weeks (Tomotherapy) starting May 4th. Finished 6/22/09. OCF member/supporter
| | | | Joined: May 2002 Posts: 2,152 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: May 2002 Posts: 2,152 | I also agree with David on this healthcare issue. Unless it is free, most of these uninsured will not bother to get it. When I have asked some of the uninsured that work for my mother who can afford it, why they have no insurance and the answer I get is 'Why do I want to buy insurance? If I get sick, I just go to the emergency room'. You would think they would at least buy disaster coverage. But there is always money for cell phones, cable TV, HD LCD TV's etc. Insurance or free treatment for the truly poor does make sense, but that is not where they are going.
Eileen
---------------------- Aug 1997 unknown primary, Stage III mets to 1 lymph node in neck; rt ND, 36 XRT rad Aug 2001 tiny tumor on larynx, Stage I total laryngectomy; left ND June 5, 2010 dx early stage breast cancer June 9, 2011 SCC 1.5 cm hypo pharynx, 70% P-16 positive, no mets, Stage I
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