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1 year after surgery - still struggling with various side effects #197656
11-29-2018 03:56 PM
11-29-2018 03:56 PM
Joined: Oct 2017
Posts: 12
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Michael Young Offline OP
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Michael Young  Offline OP
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Joined: Oct 2017
Posts: 12
Hi there

its 1 year after my tongue surgery / re-construction. The good news is that there was no evidence of disease per my last CT scan.

however, I am still struggling with various treatment side-effects

problems like stiff neck / shoulder / limited arm movements especially the left arm, I tried physiotherapy and acupuncture with limited results

the ear noise seemed louder , but still bearable

still use PEG feeding, my new tongue still swelling

my speech is regarded as 60% discernible

yet to sort out dentures

overall, I feel better. But the recovery process is longer than expected

there are lots of reports of new drugs for malignant tumor, not sure whether they are effective for tongue SCC


Take care

Michael


T4aN2cM0 left tongue SCC 10/2017
Moderately differentiated SCC
glossectomy, en bloc neck dissection and reconstruction 11/2017
Radiation (IMRT variant) and Chemo therapy ( 2xcispltn) completed 2/2018
PET - no evidence of disease 05/2018
CT - no evidence of disease 10/2018
Re: 1 year after surgery - still struggling with various side effects [Re: Michael Young] #197658
12-02-2018 04:47 PM
12-02-2018 04:47 PM
Joined: Sep 2018
Posts: 5
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Mike young Offline
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Mike young  Offline
Member
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Joined: Sep 2018
Posts: 5
Hello michael young
I am really freaking out right now!!
First off its the name. Same as mine? WHAT?
Second the dates you you started going through your journey. Almost exactly a year before i did? WHAT WHAT!!!
Third the surgery you have gone through. I have just gone through the same type of surgery? TRIPLE WHAT!!!!
I would really like to hear back from you. Please send me a message back. We seem to have alot in common for some strange reason.
I really hope to hear from you soon
Thanks
Mike young


Mike young
Re: 1 year after surgery - still struggling with various side effects [Re: Michael Young] #197659
12-03-2018 07:04 AM
12-03-2018 07:04 AM
Joined: Jun 2007
Posts: 10,189
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ChristineB Offline

Administrator, Director of Patient Support Services
ChristineB  Offline

Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)
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Joined: Jun 2007
Posts: 10,189
PA
Hi Michael!

The surgery you have been thru is a very invasive major surgery.

Did you also have radiation and chemo afterwards? I went back to read thru your posts and couldnt tell if you did rads/chemo or not. Theres a big difference if your problems are from the surgery or if these are happening due to the chemo/rads you went thru? Some major surgeries take at least a year to recover from while Rads/chemo can take 2 entire years to recover from. Even if its a year since you finished rads/chemo, theres still a more to go year to see more improvements. You may still find some of your issues will get better, probably not back to how you were before cancer but better than you currently are.

If you havent already done so working with a speech therapist is something that should be very helpful in making your speech clearer. Ive had some friends who to me sounded just fine and I had no problem understanding them. After they began seeing a speech therapist I was able to notice marked improvements in the clarity of their speech.

If you had chemo with rads and were given cisplatin, this could be whats behind the "ear noise" you mentioned. Cisplatin has a well known side effect of affecting some patients hearing. You need to talk to your doc about any hearing issues.

The stiff neck/shoulder/limited arm movement is most probably due to having a neck dissection along with your big surgery. A physical therapist can help you to make some progress with your range of motion but it could also be a permanent thing. Many OC survivors have this same problem (myself included). If the physiotherapy was done close to when you had surgery then you may want to try it again. Id suggest talking to your doc about options to help your shoulder/range of motion. Ive had my shoulder issues for 9 years since my big surgery. Now, I can always tell whenever theres a big storm on its way with it aching more than normal.

Regardless of what you may see coming out, that drug may or may not have been available at the time you were diagnosed. The 2 new immunotherapy chemos, from what I know are keytruda (pembrolizumab) and opdivo (nivolumab). Theres been discussions on the forum about the immunotherapy chemos that work on only certain OC patients. This has been shown to be effective in the trials on a case by case basis only if the patient has certain markers in their blood. Your doc (medical oncologist) may be able to give you more info about those new chemos and if anything else has shown promise for OC patients. Hopefully you will never need to go thru anything else for any other rounds of OC so you wont need any other treatments.

Ive also sent you a PM with instructions on how to add a signature. I couldnt tell what you have been thru so some of my answers could be different depending on if you went thru chemo/rads as what you are currently experiencing could be from that instead of the surgery. Best wishes with a continued recovery to hopefully get more improvements with your after effects.


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
Re: 1 year after surgery - still struggling with various side effects [Re: ChristineB] #197671
12-05-2018 01:13 PM
12-05-2018 01:13 PM
Joined: Oct 2017
Posts: 12
M
Michael Young Offline OP
Member
Michael Young  Offline OP
Member
M

Joined: Oct 2017
Posts: 12
Thanks Christine,

I have since updated my signature

You are very helpful. I learned a lot from your comments.


T4aN2cM0 left tongue SCC 10/2017
Moderately differentiated SCC
glossectomy, en bloc neck dissection and reconstruction 11/2017
Radiation (IMRT variant) and Chemo therapy ( 2xcispltn) completed 2/2018
PET - no evidence of disease 05/2018
CT - no evidence of disease 10/2018
Re: 1 year after surgery - still struggling with various side effects [Re: Mike young] #197672
12-05-2018 01:24 PM
12-05-2018 01:24 PM
Joined: Oct 2017
Posts: 12
M
Michael Young Offline OP
Member
Michael Young  Offline OP
Member
M

Joined: Oct 2017
Posts: 12
Hi Mike Young

Yes, I noticed and bit surprised

I updated my signature which I should have done prior ( so I dont waste Christine's valuable time)

I would say its coincidence

anyway we can share notes regarding our treatment and recovery

Cheers


T4aN2cM0 left tongue SCC 10/2017
Moderately differentiated SCC
glossectomy, en bloc neck dissection and reconstruction 11/2017
Radiation (IMRT variant) and Chemo therapy ( 2xcispltn) completed 2/2018
PET - no evidence of disease 05/2018
CT - no evidence of disease 10/2018
Re: 1 year after surgery - still struggling with various side effects [Re: Michael Young] #197673
12-06-2018 02:16 AM
12-06-2018 02:16 AM
Joined: Jun 2007
Posts: 10,189
PA
C
ChristineB Offline

Administrator, Director of Patient Support Services
ChristineB  Offline

Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)
C

Joined: Jun 2007
Posts: 10,189
PA
Great job!

Thank you very much!!!!


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

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