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#187730 01-18-2015 06:24 PM
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Hi all. Could have sworn I had an account here, but it may have been a while back. Anyway, intro. I live in France, I am a translator and project manager, with an IT background. I was diagnosed with stage 4 tonsil cancer end of 2009, which had spread to the tongue, had successful surgery, tongue flap, neck dissection etc., radiotherapy with chemo, all the horrors of the saliva problems, enteral nutrition, re-education for swallowing/speech etc. Wonderful, wonderful teams in the hospitals here. Cannot give them enough praise. Also post-hospital care fantastic, I consider myself very lucky.

Welll, not really. Had first metastasis in right lung in 2012, they removed a small section through key-hole surgery. The next year that showed not to have been adequate, they removed the upper half of the lung. Again, some powerful re-education. That was 18 months ago, more or less. Now I have an enlarged lymph node in the area surrounding the oesophagus, in the same area as the lung metastases were, so it didn't manage to clear it. They have decided that I need chemotheraphy, I see the consultant on the 27th.

I have breathing probs from obstruction - not massive, but noticeable; I get really really bad headaches - well, they are sort of neck/jaw aches that spread - which are certainly partly stress related, and partly the continuing effects of the radiotherapy - I could do with some more physio, I think - but generally, everything seems to be swelling up a bit in sympathy. I am tired. That old tired feeling, yeah. And this time... I cannot drum up the positivity. I put all my effort and will-power and belief into my previous bouts and worked so hard to get back to health, emotionally as well as physically; and I believed. But the chemo route this time... I feel it is the 'we don't know where to look so we'll just zap it all and hope' path. I am hoping that the consultant will jog me out of this attitude, but I am also reaching out here to try to perk myself up and to make myself stop moping, maybe by giving some others some positive experience feedback and tips - because I'm quite a jolly person by nature, and I love helping others. But just a warning, I'm probably more needy than giving right now!

So, although it is naff circumstances to have to 'meet' you all in - because you are all suffering or have all suffered from some form of this pernicious malady and it's really no fun, is it? - nevertheless, I hope we can help eachother out and gain strength from and enjoy the community.


6/09 lump undr chin
10/09 SCC R tonsular fossa T4N0M0, spread to tongue
11/09 R tonslctmy, partl glssctmy, nd
2/10 IMRTx30, Cispltnx3
5/10 thrombosis port cath remvd L jugular blckd
1/12 mets R lung, part lung remvd
1/13 mets R lung
2/13 partl lobectmy upper R lobe
12/14 MRI enlrgd nodes meta oesophgs
1/15 DX recur 4cm lymph
2/15 Start 6xCispltn+Erbitx+?
mungolina #187731 01-18-2015 06:42 PM
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Welcome to OCF! Im very sorry to read about your 3rd round of cancer. Its truly a horrendous disease!

Being usually a positive person will help make this easier. Im sure the stress from the shock of another diagnosis is making it difficult to be your regular cheerful self. Maybe I can give you a couple tips to help get you back to positive think? Think of cancer like a thief. It steals your time away from you and your loved ones. By dwelling on the cancer, a patient will worry which impacts their regular way of life. Try to limit yourself only so much time (say 5 or 10 minutes) to contemplate your situation. After that, its time to change the channel and focus on more positive things. Take things day by day, hour by hour if necessary. Try making plans with people who are positive, its good to get out and take your mind off things. Staying busy will also help make it easier to avoid the "what if's". Reading a good book, watching detailed movies, going out with friends are all ways to pass the time, hopefully making the waiting easier to bear.

Has a biopsy been done? If so, is this round of cancer considered a new cancer, recurrence or mets?

Chemo alone will not eliminate SCC by itself. Since you had rads several years ago you may need to go thru this again. At least here in the US it can be done more than once but this is on a case by case basis with many variables. I dont want to get too far ahead of myself (and cause any concern) until you are able to meet with your specialist. Until then, start making a list of every person who offers their assistance. Write them all down and tell the volunteers when the time comes you will contact them with how they can help.

Hang in there! We are here to help you get thru this. Ive done it 3 times and luckily Im still here.

Best wises!!!



PS... If you joined OCF a while back, you still would be active even if you never posted. If you can remember what email address you used, I may be able to help you by merging the accounts. Send me a message if you can remember any of the info.


Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
mungolina #187733 01-18-2015 07:31 PM
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Oh, wow Christine - just been reading your medical summary in your sig - you've been through such heavy stuff! I don't understand a lot of it , but 3 weeks induced coma - my god - the level of surgery you have faced is amazing - did they have to remove the whole mandible? More power to your elbow, really! and here you are here. Fantastic.

Yes, they did an internal scan from within the oesophagus and there was a biopsy, I have not had the detailed report yet, just confirmation that it is cancerous and it is a recurrence (round 4, actually).

Thanks for the pep talk! I'm not really brooding too much - I just recognise in myself, I do not have the core of fierce positivity and belief and just the energy I used to have to pour into it. I just don't have the faith in a cure this time.

I know I am not in a very good social situation for jolliness - I actually have zero personal friends where I am living - my partner is a civil servant and his job means we change establishments at regular intervals. We live in a state appartment within the enclosure of the facility where he works, and the French do not go great guns on socialising with work mates - there are 4 houses in the enclave. I am not good at going out and doing things on my own and my partner is not good at going out and doing things full stop. I have a lively network of friends in the town where my parents live, and near where my brother lives - it's about 2 hours drive from me - but my parents are both old and sick, and I have spent a great deal of the last 2.5 years caring for them, in between caring for myself! My mother is now dying of inoperable bowel cancer. I had been there for 6 months (one of my partner's plusses is he is incredibly patient!), got home on 13th December, had dodgy scan 15th December. Yay. I realise this is pretty stream of consciousness stuff, sorry.

I am very lucky in my partner's ex-wife - she is a lovely, lovely person (shares my birthday!), and an extremely experienced nurse. If she can (depends on the shifts she's working), she will try to accompany me when I'm seeing the consultant. She supported me massively during the first bad period, and visited me in the re-education facility I went to after the lobectomy, which was some considerable way away - she is a bundle of energy and positivity, but her mother is also ill and she has to care for her, etc etc... it's just our age! But she lives over an hour away, there are no pop-in type friends here. The French social system is really quite different, and it's hard to break in!

But I'm not brooding, I don't feel depressed as such, I don't think. Just... resigned. And I do recognise that is not too good. But we all go through phases, eh - I expect I'll come up fighting again any time soon smile


6/09 lump undr chin
10/09 SCC R tonsular fossa T4N0M0, spread to tongue
11/09 R tonslctmy, partl glssctmy, nd
2/10 IMRTx30, Cispltnx3
5/10 thrombosis port cath remvd L jugular blckd
1/12 mets R lung, part lung remvd
1/13 mets R lung
2/13 partl lobectmy upper R lobe
12/14 MRI enlrgd nodes meta oesophgs
1/15 DX recur 4cm lymph
2/15 Start 6xCispltn+Erbitx+?
mungolina #187737 01-19-2015 12:07 AM
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Mungolina, you sound like a very interesting person and I'm so sorry you are facing this recurrence. I'm a bit hesitant socially too so identify with what you are saying. You will get plenty of support here!

What sort of translation work do you do? How did you become fluent in French?



1996, ovarian cancer surgery + cisplatin and taxol.
September, 2007, SCC of left lateral tongue. Excision.
October, 2009 recurrence in scar tissue, T1NOMO. Free flap surgery from left wrist - neck dissection. 63 year old New Zealander. No chemo, no RT.
February, 2014. New primary in left buccal mucosa. Marginal mandibulectomy, neck dissection, right arm free forearm flap. T1N0M0 but third occurrence and some areas of concern: RT started 8 April and finished 19 May.
mungolina #187762 01-19-2015 11:13 PM
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Posts: 236
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Mangolina

So sorry you are facing another recurrence. You seem like a strong minded person and you will get through what ever it takes to beat the beast.
There are many friends on this forum who will be with you along the way.

Best of luck
Heidi




Sweetpe
Caregiver
RE:My Mother
Age 70
Non Smoker
SCC 3/4/2014 Left rear jaw
Mandiblctmy 3/25/2014
35RAD Completed on 06/03/2014
MRI 9/3/2014
25mm lobulated recurrence left mandible/floor of mouth carcinoma
9/23/14 Salvage Surgery
MET(s)
9/23/14 Salvage Surgery Not Successful
Chemo Recommended
1st Round of Cisplatin Chemo Started 10/20/14
Cisplatin stopped 11/20/14. Side affects to bad.
Chemo started again 1/22/15 Carbo/Docetaxel
Passed Away April 22,2015


mungolina #187765 01-20-2015 03:45 AM
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Posts: 15
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Posts: 15
Hi guys! Alpaca, thanks for asking. My parents moved to France in the early 1970's when I was 14. totallly the best way to learn a language - get thrown in! I also learnt Spanish and German in French. In fact I have a strong French accent when I speak German!

I do French or Spanish to English and will translate basically whatever people are willing to pay me for - I don't do medical or legal (except contractual), too specialised. I mostly do technical (I never realised I knew quite so much about electrical wiring or plumbing but for various historical reasons, I do...) and scientific, IT if I can get it (I have an IT background) and business.

Since 2012 I have been doing an MA in Translation (online) with the University of Bristol - so much fun - although I'm taking rather a long time about it, I was originally supposed to complete in 2014, but I've just suspended for the second time, due to my health issues. But I would so love to do a PhD, I seem at last (in my mid '50s) to have found that academic vocation I was supposed to have had when I was young!

sweetpe - I note you had cisplatin chemo (or is it your mother?) - I had that, although maybe a lower dose, I didn't find it too terrible (it roughly went, 1 week felt rubbish, 1 week ok but feeble, 1 week ok, next treatment), but I guess we are all different, eh. I really hope the new treatment works ok and the side effects are bearable.


6/09 lump undr chin
10/09 SCC R tonsular fossa T4N0M0, spread to tongue
11/09 R tonslctmy, partl glssctmy, nd
2/10 IMRTx30, Cispltnx3
5/10 thrombosis port cath remvd L jugular blckd
1/12 mets R lung, part lung remvd
1/13 mets R lung
2/13 partl lobectmy upper R lobe
12/14 MRI enlrgd nodes meta oesophgs
1/15 DX recur 4cm lymph
2/15 Start 6xCispltn+Erbitx+?
mungolina #187773 01-20-2015 08:45 AM
Joined: Dec 2010
Posts: 5,260
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YOu my dear are a trooper. I can't imagine how hard it is to not have anyone to rely on. I am sorry your parents aren't doing well either . I say I can readily identify with this as I had just gotten past the one year mark in treatment when my father had a stroke - he was in a facility but I attended to him daily he passed away 8 months later then I had a small reprieve before my father in law was diagnosed with Esophageal cancer - it's been a year since he finished treatment and so far he is NED (no evidence of disease). I do have plenty of people here who did offer help but it was nice for the most part just to have someone to chat with. I gather it is very hard to keep your spirits up without social gatherings and the such. This group should help as we are a tight knit bunch - Perhaps find your passion and follow that to give you some mental time away from this. Reading? Writing? Gardening? Painting? Try something new - maybe something you've always wanted to do?

Chemo is not fun. But I find it much more doable than rads. This is not the case for everyone - it depends on the chemo. Hugs and welcome



Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
mungolina #187776 01-20-2015 09:19 AM
Joined: Jan 2013
Posts: 1,291
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[quote] I expect I'll come up fighting again any time soon [/quote]You have a strong will and seem to be keeping a lot going on in your plans. hope others take note on keeping your head up during tough time. Thanks for offering your views here.


Don
Male, 57 - Great health except C
Dec '12
DX: BOT SCC T2N2bMx, Stage 4a, HPV+, multiple nodes
1 tooth out
Jan '13
2nd tooth out
Tumor Board -induction TPF (3 cycles), seq CRT
4-6/2013
CRT 70gr 2x35, weekly carbo150
ended 5/29,6/4
All the details, join at http://beatdown.cognacom.com
mungolina #187777 01-20-2015 10:20 AM
Joined: Apr 2014
Posts: 236
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Mungolina

It's my mother who has been battling the cancer. I've been her caregiver from day one.
The Cisplatin with FU5 was not a good experience for my mother. She developed severe Mucositis and had to be hospitalized. The doctor had to stop the treatment.

Hopefully my mother can tolerate this different treatment she is about to take.

I want to wish you the best of luck along the way. There are many forum members here who have helped me and they will help you to. If you have Any questions there is always someone here who has experienced it.

Good luck
Heidi

Last edited by sweetpe1; 01-20-2015 10:21 AM.

Sweetpe
Caregiver
RE:My Mother
Age 70
Non Smoker
SCC 3/4/2014 Left rear jaw
Mandiblctmy 3/25/2014
35RAD Completed on 06/03/2014
MRI 9/3/2014
25mm lobulated recurrence left mandible/floor of mouth carcinoma
9/23/14 Salvage Surgery
MET(s)
9/23/14 Salvage Surgery Not Successful
Chemo Recommended
1st Round of Cisplatin Chemo Started 10/20/14
Cisplatin stopped 11/20/14. Side affects to bad.
Chemo started again 1/22/15 Carbo/Docetaxel
Passed Away April 22,2015


mungolina #187781 01-20-2015 06:03 PM
Joined: Nov 2009
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Hi Mungolina. You certainly have an interesting work life. What would your thesis be on if you did a PhD? Do you read literature in different languages? Are you a fan of the French series Spiral? Can't remember what it's called in French. I've just been mulling over how the Americans and Europeans have pushed past the English in the making of TV series. It used to be that the BBC was supreme but now I find that Scandinavian TV, the French/English The Tunnel and some of the American series like The Wire, Breaking Bad and Mad Men are surpassing Brit TV. I'm a bit of a hypocrite though because I'm a lifetime viewer of Coronation Street:)

Hope I'm not hijacking the thread. I just think it's important to embrace the whole of life when we're facing these cancer issues. When I had my most recent treatment Breaking Bad on Netflix kept me going.


1996, ovarian cancer surgery + cisplatin and taxol.
September, 2007, SCC of left lateral tongue. Excision.
October, 2009 recurrence in scar tissue, T1NOMO. Free flap surgery from left wrist - neck dissection. 63 year old New Zealander. No chemo, no RT.
February, 2014. New primary in left buccal mucosa. Marginal mandibulectomy, neck dissection, right arm free forearm flap. T1N0M0 but third occurrence and some areas of concern: RT started 8 April and finished 19 May.

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