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#191910 03-02-2016 08:47 PM
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As some of you may have read previous posts of mine, I am back with additional questions.
My husband has finally decided to fight his cancer and start treatments as recommended by his doctors-and we spoke to MANY! He is scheduled for 30 radiation treatments in addition to 6 chemo treatments once a week. The chemo is the lowest dose they give. It is Paclitaxel (Taxol) and Carboplatin (Paraplatin). I am seeking out anyone who has had this same chemo drug, and radiation treatment to get more information on their experience. I know this road is going to be rough, quite horrible as I see by posts and other experiences we've heard. This is just scary, period.
When does the "hell" begin? Understanding everyone is different.
Time off work... He is hoping to work for the first 2 weeks, then take 2 months off. Will this be enough time off?
Thanks you all for your advise and support.


Wife of a stubborn survivor
Scared of the unknown
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Saying everyone is different is right on target. What one patient goes thru versus another one with the exact same diagnosis with their tumor size and location can be like night and day. The very best thing to help your husband get thru this is to focus on what is controllable... his intake. I know your husband is not always the easiest patient to deal with. Hopefully he will be on board with getting at least 2500 calories and 48-64 oz of water every single day. Also keeping his pain under control will make a big difference in how easily he manages.

As far as work goes, its very individualized depending on his profession. Sometimes those patients who have a more physical job are able to do better as they are more in shape than some who sit behind a desk. Some patients can get thru the first 4 weeks easily while others struggle from the first few treatments. By having the smaller weekly doses of chemo he shouldnt experience as many side effects.

A very general guide would be from about the end of week 3 or 4 thru the first 8-10 weeks post rads as when patients feel the worst. But then some struggle not until the last couple days of treatments and have a longer recovery with slower progress. Remember rads are cumulative and keep working even after the treatments stop. Patients usually feel the very worst at the last 2 weeks and first 2-3 weeks after it ends. I had a difficult time from about the 2nd week of rads (when the first "big bag method" of chemo kicked it). Most patients lose their ability to drive about week 4, this is especially true if they are on strong pain meds.

Make sure you make a list of every person who offered help. Tell them when the time comes you will let them know what they can do to help. There a so many small things that add up to be a huge help during treatments. Maybe a close friend would volunteer to take him to treatment once a week. For example friend number one takes Wednesdays and thats their day to drive so it gives you a little break. Another friend could pick up meds from the pharmacy. Some groups of friends could rotate making your family a nice homemade meal a few night per week. During treatments your husbands resistance will be compromised and he should avoid going too many places where there are lots of people. So maybe another relative could pick up some groceries for your family once in a while. I cant remember if you have young children or not but playdates can be a huge help as well. If someone would take the kids out for the day that will give you both a break.

I hope the info I gave you helps. I could go on and on about all the small differences between patients and it still wouldnt be enough. Always remember everyone is different. Prepare for the worst and hope for the best. By making your focus on your husbands intake, its the very best thing you can do to help him. Just dont forget in all of this to be kind to yourself and take some time to walk away and clear your head. Patients arent the only ones going thru heck, caregivers and the immediate family suffer as well.

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
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My husband had Taxol and Carboplatin as well as radiation but not for the same treatment cycle. He was given Taxol and Carboplatin after the clinical trial he was in failed to worked. He had six cycles of the chemo. The side effects were not terrible. John suffered diarrhea but that seemed to be something he would get everytime he got chemo. He had a day or two of nausea and fatigue then he would slowly get better. The MO called Taxol and Carboplatin "bread and butter" drugs. So I assume they are frequently given. Like Cisplatin, Carbo is also platinum based.


Gloria
She stood in the storm, and when the wind did not blow her way, she adjusted her sails... Elizabeth Edwards

Wife to John,dx 10/2012, BOT, HPV+, T3N2MO, RAD 70 gy,Cisplatinx2 , PEG in Dec 6, 2012, dx dvt in both legs after second chemo session, Apr 03/13 NED, July 2013 met to lungs, Phase 1 immunotherapy trial Jan 18/14 to July/14. Taxol/carboplatin July/14. Esophagus re-opened Oct 14. PEG out April 8, 2015. Phase 2 trial of Selinexor April to July 2015. At peace Jan 15, 2016.
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I agree with Christine and Gloria.

My mom had Taxol and Carboplatin with radiation concurrently. They did the Carbo instead of the Cisplatin because she had hearing aids already, and I guess the Carbo was less likely to damage her hearing (???). The first two weeks, she did pretty well and was just tired. I would say 2 1/2 to 3 weeks, it started to get quite hard and got progressively worse every week with burning, blistering in her mouth and throat/mucositis, painful swallowing, dry mouth. This all continued for a month afterward, and then she gradually healed and improved. She had to discontinue the chemo after 4 weeks because of the effects on her blood, but she tolerated the chemo well otherwise with mainly constipation and nausea from time to time. She did not lose her hair. I did hear the docs say that her reaction to her treatments was one of the worst they'd seen, so please try not to worry that this will be your husband's experience. My mom had an autoimmune disorder, so that may have played a part.

She managed to forgo a PEG tube, but I frequently wonder if she had one, if she would have been better hydrated and nourished and wouldn't have had such an extreme reaction and a tough time, and maybe she could have completed her chemo regimen. I'll be thinking about you guys and hoping the treatment is tolerable for your husband.


Mom (beautiful soul) 12/4/14 SCC L tongue (neg. biopsy 10/14);
1/8/15 hemiglossectomy/neck dissection: T3N1, extracapsular extnsn, PNI, pseudoglandular/spindle cell, margins not clr;
2/2/15 RT/carbo/taxol;
4/15/15 CT clr;
5/15 neuropathic/trigeminal pain/headaches;
6/15 recurrence flap margins/BOT; cancer encroaching skin
7/23/15 hemiglossectomy; clr margins & nodes
10/22/15 CT: nasopharyngeal tumor, jaw, and necrotic nodes; tumor under chin/corner of mouth
11/5/15 left cancer behind




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I've had Taxotere, another Taxane Chemo, and Carboplatin, Cisplatin's cousin, as some of my treatments.

I can't say that Taxotere was that easy, I won't cover my first round in 2009, a disaster, but my second time in 2012, I had some of the side effects described above, plus needing a blood transfusion, hand and foot syndrome, conjunctivitis, and stopped it after the 4th week, but I had it combined with other Chemo's or with a targeted therapy. Carboplatin was the easiest for me, but still had side effects that were manageable such as mucocitus, although the corticosteroid spiked my blood sugar to dangerous levels each infusion too.

In any case, all chemo's, targeted therapies, other drugs for that matter, have toxic side effects. which toxicities can depend on the type of chemo, combination of other chemo's, the dosage amount, the speed or rate of infusion, the frequency of each infusion, besides the patients age, general health, other co-morbities. Radiation too depends on type of radiation, the fraction size, dosage or Grays, areas radiated, ipsilateral or bi-laterally, if previously radiated, if having Chemoradiation, and the type of Chemo.

http://www.chemocare.com/chemotherapy/drug-info/taxol.aspx

http://chemocare.com/chemotherapy/drug-info/Paraplatin.aspx

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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