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#111675 02-05-2010 06:46 AM
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andy has been stalled again. the RO said he needed a break to "heal" a little. isnt that what recovery is for??? he only has 5 IMRT left.
i know he is in bad shape but it seems like the dr.s are keeping him in the dark tunnel. everytime we see the light, its a train that runs into him and knocks him back.
he is losing his will and im losing my mind. cry

i have decided to take a LOA from work. i cannot balance work and push him that last mile.

the MO is sending him home with a "baby" this weekend. he is not happy about that at all.

it sucks that the end is so close...yet just stays out of reach.

i should have known better to change his ending date...i jinxed it. mad. so i will leave it alone until his treatment actually ends, then i will go back and correct it.

thanks for letting me biotch and moan and scream and yell and....uuugggggghhhhhh!


Teresa
-----------
CG to ANDY. Nasopharyngeal Carcinoma (NPC)
T2N2cMxG4 stage 4. 43 @ dx 8/31/09
tx 9/21/09-11/06/09 cispatin/docetaxel/5-FU X3
PORT 9/9/09, PEG 12/07/09
35 IMRT-1/wk carbo 11/30/09-2/3/10
tx stopped due to complications
IMRT BOOST 3/08-3/12/10
PET 4/12/10 CLEAR!
PEG out 4/14/10
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Oh, Theresa, I am so sorry about that. I hope he gets through this quickly. I am telling you this recovery time is for the birds. Just keep us posted.


Angelia
31 at Dx.
DX: 4/30/09, 10/21/09 SCC on floor of mouth,
T1NOMO, T2N1M0
TX: 39 IMRT, 8 cisplatin 11/30/09
PET/CT: 11/03/09: Lymph node involvement
PEG/PORT: 11/09
TX end: 02/01/10
PET Scan: 04/05/10 clear
PEG Out: 06/21/10
Biopsy: 12/23/10: fibrosis
HBO: 01/04/11 - ORN
Baby girl born 11-30-12
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Teresa,

We are here for you to biotch and moan to dear, so let it go. It's a huge blow mentally to be so close to the end and having it pushed farther away, so it's OK to bitch. Anyone who's been there knows...especially near the end.

Good for you taking a LOA, my wife thankfully could be there for me the entire time during treatment and surgery and it was a huge boost for me.

Keep your chin up, you are almost there!

Eric


Young Frack, SCC T4N2M0, Cisplatin,35+ rads,ND, RT Mandiblectomy w fibular free flap, facial paralysis, "He who has a "why" to live can bear with almost any "how"." -Nietzche "WARNING" PG-13 due to Sarcasm & WAY too much attitude, interact at your own risk.
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Teresa,
I also wanted to say that I think it is great that you are taking tie off from work to be there for Andy. I really look back on all the treatments and stuff and wish I would have had more help. I did get a lot of help from church friends, but not much from my ssignificant other and I get angry when I think about it. So anyway Kudo's to you for taking off work to be there for your husband.


Angelia
31 at Dx.
DX: 4/30/09, 10/21/09 SCC on floor of mouth,
T1NOMO, T2N1M0
TX: 39 IMRT, 8 cisplatin 11/30/09
PET/CT: 11/03/09: Lymph node involvement
PEG/PORT: 11/09
TX end: 02/01/10
PET Scan: 04/05/10 clear
PEG Out: 06/21/10
Biopsy: 12/23/10: fibrosis
HBO: 01/04/11 - ORN
Baby girl born 11-30-12
Joined: Jun 2008
Posts: 148
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Sorry to hear and sometimes a day or two break is absolutely necessary. Being this close though, the doctors will push to get him across the goal line. Very tough stuff at the end. Good luck and a spouse, relative or close friend is invaluable to have close by.


Bill . . . SCC - originated in right tonsil, drifted into neck ( 28 lymph nodes removed - one positive ). Radical neck dissection in September 07, completed 34 radiation tx on January 4, 2008. Used Peg. Non smoker, 61, good shape, no previous health issues. Second year PET scan - "all clear".
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oh bill...u would think they would want to push to get him thru....so why did the RO just call and tell me they are stopping his treatment for 4 weeks and then will resume??? wtf???? mad she said that it appeared he is physically not strong enough to resume, that he needs to recover from treatment so that they can do more rounds of IMRT and chemo.

has anyone else ever stopped treatment for that long only to resume later???

first of all, i was not there when they told him he was cancer free. i am questioning him on that. our daughter took him to treatment that day. i asked her and she said she was not in the room either, but he told her that his scan showed no tumors. is that cancer free??? and if he is cancer free, why are they planning more rounds??

i am extremely distraught right now. i will have to call the RO myself and ask these questions.

another train....smack in our faces!

any feedback would be appreciated, i am at a loss cry


Teresa
-----------
CG to ANDY. Nasopharyngeal Carcinoma (NPC)
T2N2cMxG4 stage 4. 43 @ dx 8/31/09
tx 9/21/09-11/06/09 cispatin/docetaxel/5-FU X3
PORT 9/9/09, PEG 12/07/09
35 IMRT-1/wk carbo 11/30/09-2/3/10
tx stopped due to complications
IMRT BOOST 3/08-3/12/10
PET 4/12/10 CLEAR!
PEG out 4/14/10
Joined: Sep 2006
Posts: 8,311
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Teresa,

I would definitely question a 4 WEEK delay. Never heard of that length of time, 4 days maybe but not 4 weeks. How bad off is he? I remember in my last week of Tx Moffitt kept me overnight because I was so dehydrated and so nauseated and so constipated and so everything and they still wheeled my ass down to the rad room the next am to get my 8:30 Tx.


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.
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Posts: 453
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Teresa, my advise would be to ring the RO and get this information first hand. It will make you feel better because you will know exactly what's going on. 4 weeks does sound a long time but if you speak with the RO personally they might be able to put your mind at ease. Question everything until you are mentally comfortable with their answers. Even when Steve was in hospital for that 11 days they still got him to tx every day without fail. I think a loa for you is good. I took 6 months off work so I could be there every step of the way for Steve's treatment and mentally for me I think it made a huge difference. For Steve as well it helped knowing I was there with him.

Hang in there girl and let us know what you find out and how Andy is. Sounds like he's had a terrible time and I feel for you both xo


Wife to Steve 43. DX 5 May 09. T4N2MO SCC tongue, floor of mouth, lymph nodes & jaw bone
No surgery
Teeth removed 06/07/2009
radiation 13/07/2009 x 7wks
chemo 15/07/2009 x 3 Cisplatin
last TX 28/08/2009
25/11/2009 PET-lymph node activity.
08/01/2010 CT Scan-ALL CLEAR
03/03/2010-Peg removed
01/2013 left side of Jaw removed and replaced with pectoral flap.
23/12/2020 scan show lesion in tongue
01/2021 SCC stage 3 base of tongue diagnosed
01/03/2021 chemotherapy started.
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Posts: 476
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Hi Teresa. I'm so sorry you are both going through this. I don't understand stopping for 4 weeks when he is so close to the end. It took every once of stamina, strength and energy that JOhn had to get him to his treatments the last 2 weeks. His appointment was scheduled for 11am and he barely made it there and it is only 15 minutes from our house. He literally had to have someone help him out of the house, in the car, drive him there and then get him back home. If I was you, I would call the RO and tell him we do not want to stop being this close to the end. Sending you a huge HUG. I can't even imagine how frustrated and angry you are at this point. John did get scoped during his treatments and the RO told us that there was no evidence of the tumor. I didn't take that as being "cancer free". I just read that as the treatment was working.


Wanda (47) caregiver to husband John (56) age at diag.(2009)
1-13-09 diagnosed Stage IV BOT SCC (HPV+)
2-12-09 PEG placed, 7-6-09 removed
Cisplatin 7 weeks, 7 weeks (35) IMRT
4-15-09 - treatment completed
8-09,12-09-CT Scans clear, 4-10,6-11-PET Scans clear
4-2013 - HBO (30 dives) tooth extraction
10-2019 - tooth extraction, HBO (10 dives)
11-2019 - Left lateral tongue SCC - Stage 2
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Posts: 396
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andy has had ALOT of complications throughout IMRT. he has been doing IMRT for 10 weeks but has only managed to get 35 done.

I talked to the RO, she said the medical team decided to give him the break to let him heal a little and mainly to stabilize him. he will be on 24 hour a day fluids thru his port and jevity pump thru his PEG at all times. his continued low blood pressure and blood count are of "grave" concerns. he has lost his hearing completely in one ear and near deaf in the other(his chemo is carboplatin). he also lost another 7 lbs last week--thats almost 60 lbs total.
he is not cancer free cry it turns out. his tumors have shrunk so much, they are barely detectable. this is what the RO told him...he took it a different way.

how do i go back and tell EVERYONE this...and even him confused. it will take away his spirit.

frustrated doesnt even barely cover how i feel. horrified...maybe. broken...closer. but never beaten. wont give up now.


Teresa
-----------
CG to ANDY. Nasopharyngeal Carcinoma (NPC)
T2N2cMxG4 stage 4. 43 @ dx 8/31/09
tx 9/21/09-11/06/09 cispatin/docetaxel/5-FU X3
PORT 9/9/09, PEG 12/07/09
35 IMRT-1/wk carbo 11/30/09-2/3/10
tx stopped due to complications
IMRT BOOST 3/08-3/12/10
PET 4/12/10 CLEAR!
PEG out 4/14/10
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