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#163589 04-04-2013 07:01 AM
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Sooooo, we've had an interesting past week. My Dad hasn't had chemo in nearly 2 weeks, due to low white blood cells and dehydration. He goes in today to hopefully get his chemo. Also, he hasn't had radiation since last Thursday!!! They closed early on Friday (for Good Friday), so that was expected. Well, since Monday the radiation machine has been broke. smirk So, I guess all these people needing radiation just aren't getting it this week.

Kind of frustrating, because we just want to get this all over as soon as possible; however, I do think this little break is good for him. He is at the halfway point. Does this break in radiation affect anything? Did any of you have a break?

Also--my Dad decided he should get a feeding tube, mainly to supplement for extra calories/water he can't get down by mouth. My mom called on Monday morning about that. She was told they would call to schedule his appointment to get the tube....here we are on Thursday and still haven't heard from them. We're hoping they can still do it laparoscopically, instead of making a large incision and full blown surgery.

Also, my Dad is waiting for this medicine to come in (cream for his neck) and they are shipping it to his house. Well, I guess it has to be signed for and my parents will be at the cancer center the majority of the day. So, I'm taking my daughter over there to hang out and play and hopefully, the medicine will get dropped off and I can sign for it.

Ok. There's my latest ramblings. Thanks for listening....er, reading. wink


Brandi, daughter of:
Jack, age 69, non-smoker, BOT primary, Stage 4, HPV+
1/28/2013: Surgery. All cancerous masses removed. Dad is CANCER FREE!!!
2/26/2012: Beginning of TX. Weekly chemo: Carboplatin and Taxol. Daily RT (about 40 total)
4/25/2013: Will be last day of TX, both chemo and RT
shannette22 #163590 04-04-2013 07:39 AM
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Shannette,

Is your father being treated at a CCC? The lack of follow-up is odd.

To my knowledge, a few days break in treatment is not that big a deal. It allows you to heal as well and sometimes that's what's needed to get over the hump and finish. However, it's been a week and I don't know what the deal is at that length of time.

Concerning the PEG? Again, the lack of follow-up is odd. I'm personally hoping I won't need one. I'm holding my own 1/2 way through.


"T"


57
Cardiac bypass 11/07
Cardiac stents 10/2012
Dx'd 11/30/2012 Tx N2b MO Stage IV HPV+
Palatine Tonsillectomy/Biopsies 12-21-12
Selective Neck Dissection/Lingual Tonsillectomy/biopsies TORS 2/7/13
Emergency Surgery/Bleeding 2/18/13
3/13/2013 30rads/6chemo
Finished Tx 4/24/13
NED Since
shannette22 #163592 04-04-2013 08:35 AM
Joined: Jul 2012
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As mentioned previously, it's not advisable for anyone, but sometimes unavoidable, to have a break(s) during treatment unless "per your doctor." Any unplanned breaks can have an effect on the efficiency of radiation treatment, and gives a chance for the tumor to repopulate. These days are usually "made up" if one can really say that, by coming in a 6th day or adding them at the end, and not sure if they can change the treatment plan now to have daily rads 2x daily, and with the neck tissue issues. There is really nothing that can be done, other than to start treatment as soon as he can, and when the center is open. Although, mine sent us to a sister hospital, mask and all, after several days due to power loss from Sandy, being these machines use to much power for a power generator an handle. Good luck with everything.


10/09 T1N2bM0 Tonsil
11/09 Taxo Cisp 5-FU, 6 Months Hosp
01/11 35 IMRT 70Gy 7 Wks
06/11 30 HBO
08/11 RND PNI
06/12 SND PNI LVI
08/12 RND Pec Flap IORT 12 Gy
10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Remove IORT 10Gy PNI
12/13 25 Protons 50Gy 6 Wks Carbo
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fib Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent
02/19 Finally Cancer Free Took 10 yrs






shannette22 #163594 04-04-2013 09:40 AM
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He is at a cancer institute, which I guess is a CCC. Praying they have the machine fixed and all continues as planned today. I believe they were going to discuss the feeding tube more with the doctor today and take a look at his weight. I've heard some people say their pain peaked around 4 weeks. I think my Dad is wondering if he has hit the worst of it or not. If so, he thinks he can go without one. Do you think with these 4 weeks left of radiation, he'll get a lot worse?


Brandi, daughter of:
Jack, age 69, non-smoker, BOT primary, Stage 4, HPV+
1/28/2013: Surgery. All cancerous masses removed. Dad is CANCER FREE!!!
2/26/2012: Beginning of TX. Weekly chemo: Carboplatin and Taxol. Daily RT (about 40 total)
4/25/2013: Will be last day of TX, both chemo and RT
shannette22 #163599 04-04-2013 10:54 AM
Joined: Jul 2012
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The last two weeks, and two weeks after, are usually the worst due to the cumulative effects. Also, after the 5th week or 25 treatments, the effectiveness of radiation starts to decline, and to compensate this, they somehow increase the radiation, and so do the side effects increase, but many have done without feeding tubes, and some not, due to many variables involved.


10/09 T1N2bM0 Tonsil
11/09 Taxo Cisp 5-FU, 6 Months Hosp
01/11 35 IMRT 70Gy 7 Wks
06/11 30 HBO
08/11 RND PNI
06/12 SND PNI LVI
08/12 RND Pec Flap IORT 12 Gy
10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Remove IORT 10Gy PNI
12/13 25 Protons 50Gy 6 Wks Carbo
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fib Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent
02/19 Finally Cancer Free Took 10 yrs






shannette22 #163602 04-04-2013 11:24 AM
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Unfortunately radiation is cumulative and his health will deteriorate as he continues treatments. The very best thing to try to avoid it from becoming so difficult is to keep up with good nutrition and hydration every single day. No excuses or skimping, just get 2500 calories and 48 oz of water in every single day, if more can be taken in thats even better.

Be a squeaky wheel and call them back when you dont hear from a doctor. Also, just because a place is called a cancer center does not mean it really is one of the top comprehensive cancer centers in the US. Some facilities have tricky names to make you think they are more qualified than they really are and in reality they are just for profit centers which are in it for the money. It doesnt sound like this place is on top of things at all with their machine breaking down for so long, most top cancer centers have several machines so breaks dont happen.

Best wishes!!!


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
shannette22 #163642 04-05-2013 02:36 PM
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Well, the radiation machine is fixed and my Dad will be back to treatments on Monday. I do believe this break has been good for him. He has been able to heal a little bit and drink his shakes really well. Of course, now he has decided not to get the feeding tube. He thinks with this break, he's gotten enough strength to get through these last 3 weeks. I pray so. If things get too bad, he'll get the tube but I know it would be great for him if he can make it without.

He did discover today that his hair is starting to fall out from the chemo. My husband is going to give him a buzz haircut this evening. Was hoping he wouldn't lose much hair, but oh well. It'll grow back.

Just gotta get through these next 3 weeks....


Brandi, daughter of:
Jack, age 69, non-smoker, BOT primary, Stage 4, HPV+
1/28/2013: Surgery. All cancerous masses removed. Dad is CANCER FREE!!!
2/26/2012: Beginning of TX. Weekly chemo: Carboplatin and Taxol. Daily RT (about 40 total)
4/25/2013: Will be last day of TX, both chemo and RT
shannette22 #163653 04-05-2013 07:26 PM
Joined: Oct 2011
Posts: 805
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Remember...3 weeks of tx left, but the radiation keeps working for the same amount of weeks of tx. It will get pretty tough here soon. Not to be a downer, just realistic.
Here for you,
Kathy


Kathy wife/caregiver to:
Kevin age:53
Dx 7/15/11
HPV16+ SCC Stage IV BOT/R
Non smoker, casual drinker
7/27/11 Cistplatin, taxotere,5FU 2/3week sessions, followed by IMRT 125cgy x 60 (2x daily) w/Erbitux weekly. Last rad 10/26/11. Last Erbitux 10/27/11
PEG placed 9/1/11 Removed 11/8/11
Clear PET 10/12 and 10/13 and ct in 6/14
shannette22 #163655 04-05-2013 07:58 PM
Joined: Mar 2013
Posts: 421
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Sounds like your Dad found an attitude adjustment knob and turned up the volume smile It will be a great accomplishment and boost him up for recovery.

I have 3 weeks left as well and no PEG. It's my goal to make it without one. My team was adamant about not having one. If it's absolutely necessary then yes, but they want me to push through.

Haven't had any hair loss but then I wouldn't notice a difference anyway wink

"T"


57
Cardiac bypass 11/07
Cardiac stents 10/2012
Dx'd 11/30/2012 Tx N2b MO Stage IV HPV+
Palatine Tonsillectomy/Biopsies 12-21-12
Selective Neck Dissection/Lingual Tonsillectomy/biopsies TORS 2/7/13
Emergency Surgery/Bleeding 2/18/13
3/13/2013 30rads/6chemo
Finished Tx 4/24/13
NED Since
shannette22 #163664 04-06-2013 04:54 AM
Joined: Jul 2012
Posts: 3,267
Likes: 1
Patient Advocate (old timer, 2000 posts)
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Patient Advocate (old timer, 2000 posts)

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It's probably more the taxol causing the hair loss, than Cisplatin, not to mention the nape of neck, sides from radiation. I had taxotere twice, and had hair loss each time. The last time was in Oct/Nov '12, and still see hair around the bathroom, so it's thinner now than it was pre-cancer three years ago, but was lucky, still am lol, to have a full set of hair at 52. It will grow back. Good luck.


10/09 T1N2bM0 Tonsil
11/09 Taxo Cisp 5-FU, 6 Months Hosp
01/11 35 IMRT 70Gy 7 Wks
06/11 30 HBO
08/11 RND PNI
06/12 SND PNI LVI
08/12 RND Pec Flap IORT 12 Gy
10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Remove IORT 10Gy PNI
12/13 25 Protons 50Gy 6 Wks Carbo
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fib Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent
02/19 Finally Cancer Free Took 10 yrs






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