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Getting ready to take care of Mom #197725
12-26-2018 04:35 PM
12-26-2018 04:35 PM
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KellyK70 Offline OP
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KellyK70  Offline OP
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Hi all. My mom, 71, was just diagnosed with stage 2 SCC on the base of her tongue. She just received the call from her doc today after presenting her case to the tumor board. They are recommending radiation only, 5x/week for 6 weeks. They are very confident about her treatment.

She will stay with my husband and me during her treatment and as long as she wants to afterward.

I want to prepare as well as I can to keep her comfortable. I want to stock everything she might need. I am looking for recommendations for anything to help prevent or at least minimize her discomfort from the radiation.

If there is anything that was especially helpful to you along your journey, I would be so grateful to hear about it.

Re: Getting ready to take care of Mom [Re: KellyK70] #197727
12-27-2018 09:31 AM
12-27-2018 09:31 AM
Joined: Oct 2012
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Toronto, Canada
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gmcraft Offline

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Welcome to the forum. I’m sorry you have to join our circle of friends but we have all been through this journey in one capacity or another and we are here to help you.

The effects of radiation are gradual and your mother probably won’t feel the side effects until maybe the end of the second week or the third week. However, she should start the skin care routine from day 1 so that there will be less effect from skin breakdown. The routine should include putting a cream (her doctors will recommend a cream, we used Lubriderm) every time she finishes radiation. However, make sure that her skin is clean and free from any cream when she goes into the treatment room. (Think eggs frying in hot oil — that’s what will happen if she has cream on her skin during radiation). Put the cream on as soon as she comes out radiation. At our hospital, the nurses also recommend doing a saline soak — cover the part where the skin is red with a J cloth soaked in sterile saline solution (the saline is available from the pharmacy). Wait a few minutes then remove the J cloth and cover the area with cream. Do this several times a day.

Other things can include creating a little area for her in the sitting room where she can watch TV, talk to the family and has all the things she need, like water, cream, etc. This will be helpful when she starts getting fatigued from the radiation. Do make sure she drinks lots of water to make up for the dehydration. Despite the throat pain, she will have to find a way to keep up with her nutrition and fluid intake. Please look up some of ChristineB’s posts on intake.

With your support, I’m sure she will get through it.


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.
Re: Getting ready to take care of Mom [Re: gmcraft] #197733
12-29-2018 04:17 PM
12-29-2018 04:17 PM
Joined: Dec 2018
Posts: 4
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KellyK70 Offline OP
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KellyK70  Offline OP
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Thank you SO much for your excellent advice.

I am hearing that moisture is KEY.

3 different articles I read mention a humidifier, as well. There are so many options.... warm mist, cool mist... I will ask the cancer center for recommendations.

Her room is right off the family room, so tv is easy to access with comfy recliners.

I know I will get good information from the cancer center, I am just looking for “secret hints & tips” that her doc might not mention that someone has found really helpful. I will stock anything that might be soothing or helpful.

My cousin, a pharmacist, just recommended we ask for “Magic mouthwash”, for instance.

I will look for ChristineB’s posts.

Thanks again!!

Re: Getting ready to take care of Mom [Re: KellyK70] #197734
12-30-2018 12:30 AM
12-30-2018 12:30 AM
Joined: Mar 2011
Posts: 1,018
New Zealand
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tamvonk Offline
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Hi Kelly, this will be a tough couple of months for Mum and you as her support person. After week 2 or 3 she will really start to notice effects. Make sure that you have pain meds on hand for when she needs them. The throat and swallowing can become extremely painful. Many of these pain meds also cause constipation so have meds for those on hand too. The swallowing is incredibly important. She must continue to swallow . Those muscles can be lazy and very quickly forget how to work if not used. Despite the pain, do nc outage her to keep swallowing. Soft , slippery foods work best, like tinned peaches, poached eggs, custards. Make her smoothies that are high in protein and fat.muse full fat milks, yoghurts, ice creams, cream. Nut butters and whey or milk powder add extra protein. Flavour with fruits or chocolate or caramel sauce. Her tastes will change and she will complain that it all tastes like cardboard. Keep encouraging her to swallow, take adequate pain meds to do this. Have you discussed a feeding tube with her team? Most Patients do require this to ensure adequate nutrition, which is so important both for healing and to cope with treatments. Many lose a lot of weight during the treatment. Make sure Mum stays hydrated, also helps with constipation. Has she seen a dentist? Oral health is vital during treatments. Most patients develop Mucocitis - inflammation and breakdown of the mucous linings of the mouth and throat.oral thrush is another big problem that requires treating. I'm sorry this is such a list of what probably sounds like negative things, but they are the reality of treatments.
How lucky is your Mum to have you by her side. You are a wonderful Daughter. I wish you both well over the coming weeks.
Tammy


Caregiver/advocate to Husband Kris age 59@ diagnosis
DX Dec '10 SCC BOT T4aN2bM0 HPV+ve.Cisplatin x3 35 IMRT.
PET 6/11 clear.
R) level 2-4 neck dissection 8/1/11 to remove residual node - necrotic with NED
Feb '12 Ca back.. 3/8/12 total glossectomy/laryngectomy/bilat neck dissection/partial pharyngectomy etc. clear margins. All nodes negative for disease. PEG in.
March 2017 - 5 years disease free. Woohoo!
Re: Getting ready to take care of Mom [Re: tamvonk] #197739
12-31-2018 06:18 AM
12-31-2018 06:18 AM
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KellyK70 Offline OP
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KellyK70  Offline OP
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Tammy, I truly appreciate you.

We have her first appointment with the oncology radiologist on Wednesday. I am hoping they will refer to (and I will ask for) a nutrition consultation. This is going to be tough, as she is sensitive to dairy. Smoothies will need to be dairy-free. Although, I think she can eat yoghurt, so that may help & also add protein.

Loyola Cancer Center gives all oral cancer patients a g-tube preemptively, before even their first treatment. She keeps saying "I hope I don't have to use it". I try to help her accept that it wouldn't be a failure... that the important thing is that she stay hydrated and receive enough nutrition. Thank you for the advice about swallowing as "exercise" for those muscles. I had not thought of it that way.

She has an appointment with the "Oral Department" on Thursday to make a custom mouth guard. I believe this is intended to protect her teeth & gums as much as possible during treatment. They did not have this department just a few years ago when my coworker's husband went through treatment & had to fight between medical & dental insurance & hospital to get it covered. I am sensing you are in the UK, Im hoping you and yours did not have to struggle in that regard.

Will add "Thrush prevention" to my list of things to ask about... will need to research signs & symptoms.

I am not surprised that the list "sounds negative". I know this is going to be hellish for my sweet mother. I don't know if this is common, but my personal fears have nothing to do with the cancer itself... I am terrified of what these treatments will do to her quality of life. She has been very independent & cares for *everyone*. She lives in a seniors-only flat, and she helps care for so many of the others. She helps my brother's family with her grandchildren. She took care of both of her own parents when they were dying (both of cancer... she truly is terrified).

I feel so fortunate to have found this group. <3

Re: Getting ready to take care of Mom [Re: KellyK70] #197741
12-31-2018 06:46 AM
12-31-2018 06:46 AM
Joined: Oct 2012
Posts: 1,045
Toronto, Canada
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gmcraft Offline

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Please let your mother know that getting the feeding tube prior to starting treatment or during the first two weeks of treatment is standard procedure at many cancer centers. It will be too hard to put in a tube later on when the psatient is suffering from dehydration, mouth and throat pain. It is something that may help, like the mouth guard. My husband was so glad he had the tube when during week three he could not even swallow a sip of coffee, let alone the 2500 cc of water a day. If she doesn’t need it, then it will be out as soon as the doctors decide that she is eating well. If she needs it, it’s already there. I hope this helps her come to terms with it.


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.
Re: Getting ready to take care of Mom [Re: KellyK70] #197767
01-08-2019 02:12 PM
01-08-2019 02:12 PM
Joined: Dec 2018
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KellyK70 Offline OP
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KellyK70  Offline OP
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We had our first appointment with the radiation oncologist on Wednesday last week. It was interesting, as he did not paint as bleak & horrible a picture as the surgical oncologist did. He is calling it stage 1, where the surgical oncologist said stage 2.

He does NOT recommend a preemptive feeding tube for those only receiving radiation, like my mom. 70% of those patients end up not needing it, as opposed to those receiving radiation *and* chemo where only 10% of patients end up not needing it.

She had her dentistry appt yesterday, and has to have a deep cleaning AND 4 teeth pulled before starting radiation. Ugh. Can she have *fewer* painful things, please??

Today, she had a PET scan, as the radiation onc felt "something tiny which is probably nothing" in her neck. He wants to confirm there is no lymph node involvement, as there was none on her most recent CT.

So, there are still a couple of weeks before she can start any real treatment.

In the meantime, she's got a new mattress in my guest room because she's going to need the best rest she can get, and I have a warm mist humidifier on it's way.

I asked the radiation oncologist about the best moisturizer to use right after each treatment... he said Eucerin or Aquaphor. "The cheap ones from Walgreens", he said. Do any of you have a more preferred brand? He didn't seem too concerned about what type of moisturizer she uses. I've had better luck with Aveeno on my dry winter skin.

I asked about the items you all recommended. He had never heard of saline soaks, and was worried that the salt would be more drying... Re: Amifostine, he said that more recent research has shown that it while it does protect healthy cells, it may also be protecting the cancer cells from the radiation and so no one at Loyola recommends it.

Again, thank you all for listening.

Re: Getting ready to take care of Mom [Re: KellyK70] #197772
01-09-2019 11:29 AM
01-09-2019 11:29 AM
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Toronto, Canada
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gmcraft Offline

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The dental work is necessary as the mouth does not heal easily and well post radiation.

The saline soaks are good for sores, especially weeping sores as the saline dries out the sores. I gave my husband the saline soaks all through his treatment and that prevented him from getting a lot of sores. The problem with sores is that if not well cared for, they may become infected and the patient’s immune system is already compromised. However, there are many on this forum who have not done saline soaks, only the cream. It is true that the cheap kind is fine. You just have to make sure it does not contain alcohol.

You will learn more about caregiving as you move along the caregiving journey. Do post and ask when you have questions. There are others on the forum who have a lot of experience with cancer.


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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