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#109444 12-28-2009 07:08 AM
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slim Offline OP
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Hi. I'm almost afraid to put my feelings into written word. I feel like I am on the verge of breaking down worrying about John's current symptoms. John started working out at a gym in a hospital near our house a couple months ago. He lost so much muscle mass that he wanted to regain some of what he lost. So far he has regained 10 of the 30 lbs. he lost. He continues to drink protein drinks along with most foods. Around 6 weeks ago he started complaining that his left shoulder was bothering him. He assumed it was something he did at the gym. He went to the family doctor around 3 weeks ago. He told him it is probably from working out and that if he injured himself it would take longer to heal because of the radiation. He also gave him a script to get an x-ray. John hasn't seemed himself in a few days. He finally confided in me yesterday that he has lost 3 lbs. and that the pain in his shoulder can now be felt off and on in his chest.

I am on the verge of tears typing this trying not to drive myself crazy with the "what-ifs". Hopefully he will go get the x-ray done today. He saw the radiation oncologist on December 16th. He scoped him and examined him and said everything looked good. He has a CT Scan scheduled for the first week of January. I'm going to have him call today and try and move the CT Scan up and take things from there.


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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Wanda

Im sorry to hear of Johns current problems. The 'what-if's' will make you nuts with worry. Good idea to try to move up his CT scan and for him to follow up and get the x-ray taken. What doc will give you the CT results? Dont forget to let them know and if necessary, they can help with changing the date. Does he still go to the gym? While we all want to get back to our normal lives, it isnt always that easy.


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
Joined: Sep 2006
Posts: 8,311
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Wanda,

Lets pray for the best but really he still isn't 1 yr out from Tx and I didn't gain a pound until my 2nd year even consuming 3000 cals (with a lot of FAT calories). As we tell everyone the recovery can take every bit of 2 years and you shouldn't expect him to bounce back like he's recovering from the flu. Not saying you are but perhaps yours and most importantly his expectations are to high.

I didn't have a ND but in reading the numerous posts about their side effects, it could have well played a part in his shoulder injury due to the lack of total muscle support in that area.


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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slim Offline OP
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Thanks David and Christine. I'm trying not to over analize everything but his neck disection was on the right and the shoulder pain is on the left. He NEVER complains about anything and the fact that it is 6 weeks later and it is now bothering his chest has me worried. He is scheduled for the CT Scan on January 9th but is going to try and get it moved up.

UPDATE - CT Scan moved up to tomorrow at 9:15am - John tells me to stop worrying. Easier said then done.

Last edited by slim; 12-28-2009 08:30 AM.

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
Joined: Sep 2009
Posts: 701
Likes: 1
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Wanda,

I am so sorry that you and John are having a tough time. I understand the fear with a new symptom. Every time Clark notices something new or different, a shot of adrenalin surges through me. It is hard to not worry. Take a few deep breaths and calm yourself down. You will do what you have to when you have some more information. Until then, please know that there are many of us who care about you both. And keep writing! Don't let those feelings stay bottled up.

Anita


Anita (68)
CG to husband, Clark, 79,
DX SCC 11/07, T4N0Mx, PEG 1/08, RAD, post rad infection 3/08,
HBOT 40 dives, ORN, Surg 11/09 mandibulectomy w/fibular graft.
Plastic Surg 4/10, 12/10, 3/11, 10/11, 4/12, 10/12. All PETS clear,
PEG out 1/11. 6/11 non union jaw fracture
Fractured jaw w/surgery 7/14
Aspiration pneumonia 7/21, 10/22
PEG 7/21
Botox injections
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Posts: 396
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Wanda,
sorry to hear about Johns new symptoms. heres to hoping he just did too much too soon.
im glad the scan was moved til tomorrow.
crying is a great release so do not keep it bottled up. i know how tough it can be to have to be strong for your husband, not show fear in front of him, but need to cry. i take alot of trips to the "store" and use this as my release time. at times i will purposely forget something to have an excuse to go back out if i need to.
hang in there. keep us posted.


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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Posts: 2,152
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If he had weakness on the right side, he should have been seeing a Physical Therapist, not pounding iron at the gym. He may have overdone it on the left trying to compensate for the weak right. I injured my back after my first neck dissection by sitting in a funny position at my desk trying to compensate for the weak right shoulder. My chair had no arms was the problem. This resulted in what is called a 'winged scapula' causing all manor of back pain and 9 months of PT to fix.

Hopefully this is some kind of injury or infection. Try not to freak out. I know, easier said than done. Keep us posted.

Take care,
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
Joined: Jan 2009
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slim Offline OP
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He has NEVER had any weakness from the neck disection. They only removed lymph nodes including a 4cm malignant lymp node, no muscle. He lost muscle mass from losing 30 lbs. that he couldn't afford to. He wasn't pounding iron at the gym. He hates working out and certainly doesn't "power lift". He is going to a gym/rehab facility at a hospital not a regular gym.

Last edited by slim; 12-28-2009 11:30 AM.

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
Joined: Jul 2007
Posts: 939
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Posts: 939
Wanda,

There is no magic wand to wave to allay your fears...it is the elephant that always sits in the room. I'm not sure, when these things crop up, that there is anything to do other than what you are doing and that is to find comfort in those that have walked this path. Hopefully, the scans will bring good news and you can send that elephant to a corner somewhere.

Just think cruise cool and that beautiful calm water in the Carib to help you breathe better when the fear starts to rise.

BTW..the Oasis was wonderful...too much to do in a week. Embarkation was a snap...debark...not so much.

Hugs, Deb


Deb..caregiver to husband, age 63 at diagnosis, former smoker who quit in 1997.
DIAGNOSIS: 6/26/07 SCC right tonsil/BOT T4N0M0
TREATMENT START: 8/9/07 cisplatin/taxol X 7..IMRT twice daily X 31.5.
TREATMENT END: 10/1/07
PEG OUT: 1/08
PORT OUT: 4/09
FOLLOWUP: Now only annual exams. ALL CLEAR!

Passed away 1/7/17 RIP Bill
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Hi, Wanda,

Just wanted you to know that I am thinking about you and your husband. I'm sending you healthy thoughts for a Happy New Year.

Anita


Anita (68)
CG to husband, Clark, 79,
DX SCC 11/07, T4N0Mx, PEG 1/08, RAD, post rad infection 3/08,
HBOT 40 dives, ORN, Surg 11/09 mandibulectomy w/fibular graft.
Plastic Surg 4/10, 12/10, 3/11, 10/11, 4/12, 10/12. All PETS clear,
PEG out 1/11. 6/11 non union jaw fracture
Fractured jaw w/surgery 7/14
Aspiration pneumonia 7/21, 10/22
PEG 7/21
Botox injections
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