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Joined: Apr 2014
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My mother just finished her second round of Cisplatin and the side effects are worse than the first one. Her lips and tongue have little splits all over them. My goodness she is in some pain. The swelling in her face and lips is so bad also. The thick Flem is the worst rite now .

I hate seeing her like this. After her first treatment it took about two weeks until she started to feel just a little bit better.

My mom is steady loosing weight and now with her mouth being so sore I guess she will loose more. She cant even begin to eat rite now with all these cuts all over.

This has to be the hardest thing for my mother to endure. I wish there was something more I could do to help her.


Bless each and Every one of you
Heidi


Sweetpe
Caregiver
RE:My Mother
Age 70
Non Smoker
SCC 3/4/2014 Left rear jaw
Mandiblctmy 3/25/2014
35RAD Completed on 06/03/2014
MRI 9/3/2014
25mm lobulated recurrence left mandible/floor of mouth carcinoma
9/23/14 Salvage Surgery
MET(s)
9/23/14 Salvage Surgery Not Successful
Chemo Recommended
1st Round of Cisplatin Chemo Started 10/20/14
Cisplatin stopped 11/20/14. Side affects to bad.
Chemo started again 1/22/15 Carbo/Docetaxel
Passed Away April 22,2015


Joined: Jan 2013
Posts: 1,291
Likes: 1
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Chemo treatment can have drastic side effects, it is so different for each person. Your mother is on a 4 week cycle? Mine was every 3 weeks. The first week I was just knocked down, the second week my strength was returning, the third week I was just feeling 100%, then right back into the infusion center.

It is rough but it is limited. Just give her as much support as you can to help her through it.


Don
Male, 57 - Great health except C
Dec '12
DX: BOT SCC T2N2bMx, Stage 4a, HPV+, multiple nodes
1 tooth out
Jan '13
2nd tooth out
Tumor Board -induction TPF (3 cycles), seq CRT
4-6/2013
CRT 70gr 2x35, weekly carbo150
ended 5/29,6/4
All the details, join at http://beatdown.cognacom.com
Joined: Apr 2014
Posts: 236
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Yes she is suppose to be on a three week cycle. The first treatment was bad but after a couple weeks she was feeling better. She even started to get out of the house some. Then like you said back to the infusion room . She feels so bad today that she said this is it. I'm not doing anymore chemo treatments . Hopefully she don't give up. I'm always encouraging that it's going to get better.

Thank you for the reply donfo
Heidi


Sweetpe
Caregiver
RE:My Mother
Age 70
Non Smoker
SCC 3/4/2014 Left rear jaw
Mandiblctmy 3/25/2014
35RAD Completed on 06/03/2014
MRI 9/3/2014
25mm lobulated recurrence left mandible/floor of mouth carcinoma
9/23/14 Salvage Surgery
MET(s)
9/23/14 Salvage Surgery Not Successful
Chemo Recommended
1st Round of Cisplatin Chemo Started 10/20/14
Cisplatin stopped 11/20/14. Side affects to bad.
Chemo started again 1/22/15 Carbo/Docetaxel
Passed Away April 22,2015


Joined: Dec 2003
Posts: 2,606
Likes: 2
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Heidi, does your mother have a PEG and how often are labs done? One thing that will make chemo much worse is inadequate hydration or food intake. The body has to get the toxic poison out.


SCC Stage IV, BOT, T2N2bM0
Cisplatin/5FU x 3, 40 days radiation
Diagnosis 07/21/03 tx completed 10/08/03
Post Radiation Lower Motor Neuron Syndrome 3/08.
Cervical Spinal Stenosis 01/11
Cervical Myelitis 09/12
Thoracic Paraplegia 10/12
Dysautonomia 11/12
Hospice care 09/12-01/13.
COPD 01/14
Intermittent CHF 6/15
Feeding tube NPO 03/16
VFI 12/2016
ORN 12/2017
Cardiac Event 06/2018
Bilateral VFI 01/2021
Thoracotomy Bilobectomy 01/2022
Bilateral VFI 05/2022
Total Laryngectomy 01/2023
Joined: Apr 2014
Posts: 236
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Uptown

yes she has the peg but I guess her stomach has shrunk so much that barley she can only hold one can through it. If I start a second can it doesn't go down. In a day she is only getting 2 cans total. That is just not enough calories I know.

Her lips and mouth are so burnt from this round of Chemo treatment that I just put a call in to her doctor. I'm waiting just a little while for a return call and then I am bringing her to the ER.

Such a bad night we had.
Heidi


Sweetpe
Caregiver
RE:My Mother
Age 70
Non Smoker
SCC 3/4/2014 Left rear jaw
Mandiblctmy 3/25/2014
35RAD Completed on 06/03/2014
MRI 9/3/2014
25mm lobulated recurrence left mandible/floor of mouth carcinoma
9/23/14 Salvage Surgery
MET(s)
9/23/14 Salvage Surgery Not Successful
Chemo Recommended
1st Round of Cisplatin Chemo Started 10/20/14
Cisplatin stopped 11/20/14. Side affects to bad.
Chemo started again 1/22/15 Carbo/Docetaxel
Passed Away April 22,2015


Joined: Jun 2007
Posts: 10,507
Likes: 6
Administrator, Director of Patient Support Services
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Your mothers intake must be increased, no wonder she feels so horrible. Ask the doc for a prescription to get a feeding pump from the medical supply company. You can hook this up to run overnight at a slow rate so she will be able to take in at least 3 cans overnight. Just make sure she is propped up on a few pillows when doing feedings. Another way she may be able to tolerate it better is to slow down the rate. Sounds like you are doing the push method. How about doing only 4 oz at a time and then rinsing, try again an hour later with 4 more oz.



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: Dec 2003
Posts: 2,606
Likes: 2
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I'm so sorry for the difficulties.


SCC Stage IV, BOT, T2N2bM0
Cisplatin/5FU x 3, 40 days radiation
Diagnosis 07/21/03 tx completed 10/08/03
Post Radiation Lower Motor Neuron Syndrome 3/08.
Cervical Spinal Stenosis 01/11
Cervical Myelitis 09/12
Thoracic Paraplegia 10/12
Dysautonomia 11/12
Hospice care 09/12-01/13.
COPD 01/14
Intermittent CHF 6/15
Feeding tube NPO 03/16
VFI 12/2016
ORN 12/2017
Cardiac Event 06/2018
Bilateral VFI 01/2021
Thoracotomy Bilobectomy 01/2022
Bilateral VFI 05/2022
Total Laryngectomy 01/2023
Joined: Apr 2014
Posts: 236
Gold Member (200+ posts)
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Joined: Apr 2014
Posts: 236
Thanks you Uptown
And
Thank you Christine for the advice with the feeding tube. Sounds like a good idea with the feeding pump. I will call a medical supply Co. for one.

I am using Jevity in her feeding tube . Is there a higher calorie of formula I should be using? The Jevity only has 250 calories per can.

I had to bring my mother for an emergency visit to the Oncologist today. She has a severe case of Mucositis. Its so painful. The Doc. gave her 2 different precriptions of a mouth rinse and a steroid pill. Hopefully she can get some relief .



Thanks
Heidi



Last edited by sweetpe1; 11-24-2014 06:22 PM.

Sweetpe
Caregiver
RE:My Mother
Age 70
Non Smoker
SCC 3/4/2014 Left rear jaw
Mandiblctmy 3/25/2014
35RAD Completed on 06/03/2014
MRI 9/3/2014
25mm lobulated recurrence left mandible/floor of mouth carcinoma
9/23/14 Salvage Surgery
MET(s)
9/23/14 Salvage Surgery Not Successful
Chemo Recommended
1st Round of Cisplatin Chemo Started 10/20/14
Cisplatin stopped 11/20/14. Side affects to bad.
Chemo started again 1/22/15 Carbo/Docetaxel
Passed Away April 22,2015


Joined: Jun 2007
Posts: 10,507
Likes: 6
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)
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Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 10,507
Likes: 6
Ask the doc or nutrionist for higher calorie formula. Im pretty sure Jevity has a more calorie dense formula available. If not there are hundreds of others on the market.



PS.. If the doctor hasnt already given a prescription for the feeding pump ask them to send one directly to the medical supply company. To purchase a new Kangaroo Joey pump (most common model) can cost $700+++.


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: Apr 2014
Posts: 236
Gold Member (200+ posts)
OP Offline
Gold Member (200+ posts)

Joined: Apr 2014
Posts: 236
Thanks so much for the advice Christine. I will call the doctors office first thing in the morning. There is no way she can continue going on like this. Since my mother was diagnosed she has lost about 40 pounds. Its to the point where she cant afford to loose another pound.

Thanks again for all the advice
Heidi


Sweetpe
Caregiver
RE:My Mother
Age 70
Non Smoker
SCC 3/4/2014 Left rear jaw
Mandiblctmy 3/25/2014
35RAD Completed on 06/03/2014
MRI 9/3/2014
25mm lobulated recurrence left mandible/floor of mouth carcinoma
9/23/14 Salvage Surgery
MET(s)
9/23/14 Salvage Surgery Not Successful
Chemo Recommended
1st Round of Cisplatin Chemo Started 10/20/14
Cisplatin stopped 11/20/14. Side affects to bad.
Chemo started again 1/22/15 Carbo/Docetaxel
Passed Away April 22,2015


Joined: Jan 2013
Posts: 65
Supporting Member (50+ posts)
Offline
Supporting Member (50+ posts)

Joined: Jan 2013
Posts: 65
So sorry your mom is going through this. Charles has been using Osmolite 1.5 through a nose feeding tube and a pump. It has 355 calories per can and a good amount of protein.


Wife/caregiver to Charles
ENT diagosed SCC Rt Tonsil Stage IV, MET 6 lymph nodes in neck 1/2001
Tonsillectomy, RND and six weeks RADS 2/2001
ENT diagnosis from CT scan, SCC in Rt tongue 2/13
25% of tongue removed 2/13 (clear margins)
SCC BOT with mets to 2 level 2 nodes and Lt. Delphian node 8/2014
Surgical biopsy shows cancer in larynx 9/2014
Laryngectomy, resection & rebuilt tongue w/ pectoral muscle, selective neck dissection 11/2014
Recurrences '16 HPV Neg No EGFR Mutations Detected
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