encouragement
My mom was diagnosed with cancer in July - squamous cell carcinoma. The cancer was on the back of her tongue, spread a little to the floor of her mouth, and to some of the lymph nodes on her neck. She was a heavy smoker, but she quit about 4 years ago. Her getting cancer has been a fear of mine since I was young, so when my dad called and gave me the news I felt.. hard to explain but I just sat on my couch and didn't move for a long time.
She has been receiving treatment since the second week of August (treatment will be 7 weeks in total- radiation once a day Monday-Friday and chemo with cisplatin 3x). The first day of treatment she got the cisplatin and her first radiation, and I was completely unprepared for the side effects from the chemo. Scary stuff. I knew chemo was intense, but I had no idea how bad it would be until I saw her go through it.
Within four days, the chemo side effects were wearing off and last week was pretty good for her. She was eating slowly and looking much better. This week has been less good because the side effects from the radiation have been very intense - she's very swollen and her throat is killing her. We find that the more she pushes herself to talk and to drink water, the better her throat feels. She does have a feeding tube, and she's been using that so she's only lost about 4 lbs so far. We're trying to minimize the weight loss as much as possible.
She has her second round of chemo on Monday and I'm terrified for her. I don't let her know that, but my sense is that she knows it because she is my mom. Can anyone offer any tips - seriously anything - that they found helped them while going through this, radiation or chemo related. She's got nexium for the heart-burn from the chemo, and her anti-nausea medications worked well enough last time to keep her from vomiting. All she's been using for the radiation has been tylenol with codeine. We're trying humidifiers.. I'm thinking of getting her a saliva substitute (I read about those somewhere), but any advice at all (and encouragement! I love hearing success stories!) would be greatly appreciated.
Thank you all so much, and keep fighting the good fight everyone!
Antonia
Comments
-
Welcome
Welcome to the forum Antonia, sorry about your mother....
I had STGIII SCC Tonsil Cancer HPV+...nine weeks of chemo in three week cycles (Cisplatin, Taxotere and 5FU), then seven weeks of weekly chemo (Carboplatin), and 35 daily sessions of radiation.
Not really sure of the additional sides you are talking about as you covered the majority and seems like your mother is doing pretty much as expected and under control.
Hydration is always very important, especially with Cisplatin.
I also had Emend for anti-nausea meds during the bigger doses of chemo. It's given the day of chemo and the next two days after..Zofran for maintaining any additional nausea between doses.
I didn't have the PEG (feeding tube), so I mainly survived off of water, Ensure Plus and pain meds for that 7 - 8 week period I mention below.
Unfortunatley, she is going to go through a rough time for a good 7 - 8 weeks with the rads mainly. She'll more than likely take a big hit on both taste and saliva.... But, more then likely through time, they'll both come back to some degree.
Some like myself get most back of both, others not as much...
One thing that you'll learn, everyone is different.
Main thing to stress is hydration, staying positive and rest...
Best,
John0 -
Meds
My husband went through the same treatment and they considered cisplatin a "big gun" so at least you know they are being aggressive. Don't hesitate to tell her health care team if her side effects are not under control they can increase medications as needed and eventually they may think a pain patch is called for.....usually a fentanyl patch. Also, before eating my husband would use the "magic mouthwash" which helps numb the throat and lasts about 20 minutes.
Encourage her to keep swallowing and eating what she can even though she has a peg tube. Smoothies, milkshakes, creamed soups, yoghurt, etc. Hang in there and you will get through it. She will get through it because of such a loving daughter in her life. My husband is fighting hard and our children have been our biggest motivators! You are her blessing!!!
Robinleigh0 -
Thank you for the replySkiffin16 said:Welcome
Welcome to the forum Antonia, sorry about your mother....
I had STGIII SCC Tonsil Cancer HPV+...nine weeks of chemo in three week cycles (Cisplatin, Taxotere and 5FU), then seven weeks of weekly chemo (Carboplatin), and 35 daily sessions of radiation.
Not really sure of the additional sides you are talking about as you covered the majority and seems like your mother is doing pretty much as expected and under control.
Hydration is always very important, especially with Cisplatin.
I also had Emend for anti-nausea meds during the bigger doses of chemo. It's given the day of chemo and the next two days after..Zofran for maintaining any additional nausea between doses.
I didn't have the PEG (feeding tube), so I mainly survived off of water, Ensure Plus and pain meds for that 7 - 8 week period I mention below.
Unfortunatley, she is going to go through a rough time for a good 7 - 8 weeks with the rads mainly. She'll more than likely take a big hit on both taste and saliva.... But, more then likely through time, they'll both come back to some degree.
Some like myself get most back of both, others not as much...
One thing that you'll learn, everyone is different.
Main thing to stress is hydration, staying positive and rest...
Best,
John
Thank you for the reply John!
It is reassuring to hear that my mom is getting the right medicines for her side effects, and that she is doing as expected. Part of my anxiety is that I worry the doctors are missing something - I know they're busy and I can't make her appointments because I work so I don't get to ask the questions I want to ask. Just me being paranoid, but I can't help it!0 -
Thanks for the reply! I'mrobinleigh said:Meds
My husband went through the same treatment and they considered cisplatin a "big gun" so at least you know they are being aggressive. Don't hesitate to tell her health care team if her side effects are not under control they can increase medications as needed and eventually they may think a pain patch is called for.....usually a fentanyl patch. Also, before eating my husband would use the "magic mouthwash" which helps numb the throat and lasts about 20 minutes.
Encourage her to keep swallowing and eating what she can even though she has a peg tube. Smoothies, milkshakes, creamed soups, yoghurt, etc. Hang in there and you will get through it. She will get through it because of such a loving daughter in her life. My husband is fighting hard and our children have been our biggest motivators! You are her blessing!!!
Robinleigh
Thanks for the reply! I'm trying to be a motivator, but some days I just feel so bad for her..
They gave her the "magic mouthwash" and unfortunately she hated it - said it made her mucus worse and made her nauseous because from it leaving a bad taste in her mouth. The radiologist said this happens to some people.
I'll bring out the blender this weekend and play with making some smoothies and milkshakes. Thanks for the tip! Maybe it can be an activity for us to do to keep her mind off of things.
Good luck to you, your husband, and your family!0 -
I just used the tube
Hi Antonia,
I don't know how your mom feels about eating. I had three round of Cisplatin, and 35 rad days. I got my feeding tube before I started because everyone said that would be easier and help me maintain weight. I was told to keep swallowing water to keep the swallow muscle memory. But I didn't eat sqaut for a long time during or after the treatment. I could always swallow, and probably could have it I would have had too--many on here have drank their way through without the tube, or eaten some variations of gruel--but food tasted very bad. Not just the taste, which was either absent or bad, but the texture. It was bad in so many ways. Maybe your mom can take shakes better than I could, but the tube food worked for me. I lost some weight, but within acceptable limits. I'm glad I didn't have to eat.
best, Hal0 -
TipsHal61 said:I just used the tube
Hi Antonia,
I don't know how your mom feels about eating. I had three round of Cisplatin, and 35 rad days. I got my feeding tube before I started because everyone said that would be easier and help me maintain weight. I was told to keep swallowing water to keep the swallow muscle memory. But I didn't eat sqaut for a long time during or after the treatment. I could always swallow, and probably could have it I would have had too--many on here have drank their way through without the tube, or eaten some variations of gruel--but food tasted very bad. Not just the taste, which was either absent or bad, but the texture. It was bad in so many ways. Maybe your mom can take shakes better than I could, but the tube food worked for me. I lost some weight, but within acceptable limits. I'm glad I didn't have to eat.
best, Hal
Not sure if you saw the HNC Superthread or not. There are tons of tips there. You can wade through it a little at a time.
Best wishes for mom. Wishing you well,
Sweet
Tons of info and tips:
HNC SUPERTHREAD0 -
Ughchameleon said:Thanks for the reply! I'm
Thanks for the reply! I'm trying to be a motivator, but some days I just feel so bad for her..
They gave her the "magic mouthwash" and unfortunately she hated it - said it made her mucus worse and made her nauseous because from it leaving a bad taste in her mouth. The radiologist said this happens to some people.
I'll bring out the blender this weekend and play with making some smoothies and milkshakes. Thanks for the tip! Maybe it can be an activity for us to do to keep her mind off of things.
Good luck to you, your husband, and your family!
The mucous! We took mucinex to help with that but, honestly it didn't get rid of it. Gonna have to keep large cups around for her to spit into and lots of tissue. But, remember, it's not forever.
Great recipes on sweet blood's super thread. Don't be hurt if some of them go into the disposal. Just trial and error.
Best wishes, robinleigh0 -
Hi and Welcome
Antonia,
I went through the same treatment plan as your Mom: 7 weeks of rads with 3x Cistplatin, also for base of tongue scc stage 4.
I am 1 year post treatment and my last PET scan earlier this month was clean. Hope this will give you and your Mom some encouragement.
I wasn't bothered too much by the 1st chemo, though the final 2 treatments were not a lot of fun. I gargled with a baking soda/salt mixture which helped my throat. As was stated earlier, be sure to advise your med team of any and all problems, they should be helping out with pain issues and the like.
I would also recommend your Mom try to get out of the house and take a walk each day. Studies have shown that patients who get some moderate exercise during chemo/rads tend to have less severe side effects as well as responding better to the treatment. Getting a bit of exercise can help with the fatigue factor also. I found that just getting out and taking a walk in the park did wonders for me mentally also. Nothing too strenuous, a nice leisurely stroll would suffice. I started out walking 30-45 minutes each day, by the end of treatment, 15-20 minutes was all I could manage. I really believe it helped me make it through all this. Cheers.
Jimbo0 -
Hi Antoniasweetblood22 said:Tips
Not sure if you saw the HNC Superthread or not. There are tons of tips there. You can wade through it a little at a time.
Best wishes for mom. Wishing you well,
Sweet
Tons of info and tips:
HNC SUPERTHREAD
I also Welcome you to our family here on CSN, as you can see it is the right place to get answers to your questions.
All the best
Hondo0 -
SuperThreadsweetblood22 said:Tips
Not sure if you saw the HNC Superthread or not. There are tons of tips there. You can wade through it a little at a time.
Best wishes for mom. Wishing you well,
Sweet
Tons of info and tips:
HNC SUPERTHREAD
Sorry Dawn, I was just going to mention that, saw you have it covered....
Antonia, the SuperThread as Dawn mentioned has tons of info for the newbies like yourself. It also has a lot of good information and resipes for the smoothies...
Like mentioned above also, anything out of the norm communicate with the MD's, they'll have something for it.
Go to the MD visits if you can or try and have someone else go also...take notes beforehand and during. Usually most people forget what was said during the visits just because of the magnitude of the situation..then later try to remember what went on...LOL, very common.
As for the numbing solutions, once she starts having more pain her taste will be minimal anyways and she won't taste the solutions as much....
Main thing is no matter what it tastes like or how much pain you have to stay hydrated and take in calories.....
If the pain is really bad they'll give you meds for it if you ask. I had the numbing solutions, liquid hydrocodon, oxicotin, even morphine...you do what you have to do to get the fluids and calories in you.
Best,
John0 -
Good PointJimbo55 said:Hi and Welcome
Antonia,
I went through the same treatment plan as your Mom: 7 weeks of rads with 3x Cistplatin, also for base of tongue scc stage 4.
I am 1 year post treatment and my last PET scan earlier this month was clean. Hope this will give you and your Mom some encouragement.
I wasn't bothered too much by the 1st chemo, though the final 2 treatments were not a lot of fun. I gargled with a baking soda/salt mixture which helped my throat. As was stated earlier, be sure to advise your med team of any and all problems, they should be helping out with pain issues and the like.
I would also recommend your Mom try to get out of the house and take a walk each day. Studies have shown that patients who get some moderate exercise during chemo/rads tend to have less severe side effects as well as responding better to the treatment. Getting a bit of exercise can help with the fatigue factor also. I found that just getting out and taking a walk in the park did wonders for me mentally also. Nothing too strenuous, a nice leisurely stroll would suffice. I started out walking 30-45 minutes each day, by the end of treatment, 15-20 minutes was all I could manage. I really believe it helped me make it through all this. Cheers.
Jimbo
I also took walks during treatment....
Not only did it make me feel good, it was a chance to get back to nature a little and take time to smell the flowers as they say.
During most treatment I did normal things (to me), lawn work, fishing, this that and the other....let your body dictate what it's capable of, and listen to it....
Stay hydrated...
Best,
John0 -
WELCOME
Welcome to the site. There will be a few members here who have some excellent prepared threads that will give you everything you ever wanted to know about what is in store.
I am 10 months post treatment from Stage 4B Tonsil CA with METS to the Nodes.
I am doing great so far and all is good.
Your mom will come out the other side just like me and all of the others here.
Stay strong!!
Mike0 -
Antonialuv4lacrosse said:WELCOME
Welcome to the site. There will be a few members here who have some excellent prepared threads that will give you everything you ever wanted to know about what is in store.
I am 10 months post treatment from Stage 4B Tonsil CA with METS to the Nodes.
I am doing great so far and all is good.
Your mom will come out the other side just like me and all of the others here.
Stay strong!!
Mike
Welcome. Great group of people here with tons of good info. Sounds like you are pretty well informed, but don't hesitate to ask quesitons. I learned much more here than I did from my docs.
Agree with everything suggested so far, especially: exercise, keeping hydrated and the salt water/baking soda swish and spit mixture. One thing that I did not learn about until later was using a suction machine to help with the nasty mucous issue. Several on here have used them and they say nothing but good things about it.
Good luck to you and your Mom!
Positive thoughts!
Greg0 -
Mom
I agree with John about staying positive, hydration and rest. I didn't have chemo but I did have radiation and those 3 things really helped me get through a tough time. I had 30 sessions of IMRT radiation and about 1/2 way through I was so sick I didn't think I was going to be able to finish, but I did.
You're mom may not say as much to you, but she knows her limitations. Let her take the lead if she is able to and she will let you know what she needs. And remember, cancer patients and their caregivers view success differently. You may view success as how productive her day is; she may view it as success is simply getting out of bed.
Good luck!
Teresa0 -
Welcome Antonia. I am
Welcome Antonia. I am caregiver for my husband who was diagnosed with stage 4 base of tongue cancer with matistis to 2 nodes. He finished treatment last Thursday, 8 weeks rad and cisplatin (was suppose to be 3Xs but had to stop after second because the kidneys were affected), and three infusions of Erbatux. Jim was able to drink Ensure and water for few weeks but then everything tasted so bad he was unable to drink it except really cold water. The last week of treatment even the water tasted nasty and he will not drink it. The dry mouth and mucous got worse the last week or two and continues to be bad. Other than sore tongue he has not had a lot of pain and does not take pain meds regularly. As others have said, Hydration, hydration, hydration. Jimwas hospitalized twice for dehydrstion, even with drinking what I considered a lot of water. The last hospital stay was due to an infection in a saliva gland. ENT said caused from lack of hydration in mouth.
Any how, welcome to the family. You will find support, encouragement and knowledge from some great people here. And, real prayer warriors as well.
Blessings for your mom and family.
Debbie0
Discussion Boards
- All Discussion Boards
- 6 CSN Information
- 6 Welcome to CSN
- 121.2K Cancer specific
- 2.8K Anal Cancer
- 440 Bladder Cancer
- 306 Bone Cancers
- 1.6K Brain Cancer
- 28.4K Breast Cancer
- 391 Childhood Cancers
- 27.9K Colorectal Cancer
- 4.6K Esophageal Cancer
- 1.2K Gynecological Cancers (other than ovarian and uterine)
- 12.9K Head and Neck Cancer
- 6.3K Kidney Cancer
- 666 Leukemia
- 789 Liver Cancer
- 4.1K Lung Cancer
- 5.1K Lymphoma (Hodgkin and Non-Hodgkin)
- 235 Multiple Myeloma
- 7.1K Ovarian Cancer
- 53 Pancreatic Cancer
- 486 Peritoneal Cancer
- 5.3K Prostate Cancer
- 1.2K Rare and Other Cancers
- 532 Sarcoma
- 717 Skin Cancer
- 647 Stomach Cancer
- 190 Testicular Cancer
- 1.5K Thyroid Cancer
- 5.8K Uterine/Endometrial Cancer
- 6.3K Lifestyle Discussion Boards