Please help my sister - Tonsil cancer and Covid
Hello all, My sister is 63 years of age and has been diagnosed with tonsil cancer more than 3 years ago. 1after radiation treatments, she can't eat any more and has to use the feeding tube since and the cancer is still with her. She recently got covid and getting weaker and weaker...All the nurses and emergency Dr sent her home and told us to prepare for hospice care. Could you please give me some advice on how to save my sister's life... please... i'm very hopeless and desperate at the moment.
Thanks,
TN
Comments
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Hello Hoa, and welcome to the CSN H&N discussion group. I am sorry you are here. But I can feel the compassion and love you have for your sister. My heart goes out to you. I am not skilled medically but I have been through some difficult situations with cancer so I have that perspective and I try to help anyone I can with what I know and references from other sources.
I am sure there is an extensive underlying story of her discovery of cancer and the treatment she received. You don't say if any surgery was involved but at this point, that is not relevant. Since they sent her home from the hospital they must be confident that there is not a treatment available that will help her. They are saying they have done all they can.
An option for you may be to get a second opinion. Is there a major cancer center or major hospital nearby where she is located? You would want a place like that that sees lots of patients like your sister and has the experience and specialized people and equipment available to treat a situation like hers. A second opinion would help you feel better in this situation and may produce options for her and there may be something the other doctors missed or overlooked, it happens.
But in the meantime, while you are getting other opinions you want to make her as comfortable as possible and keep any pain nausea, or other adverse conditions she has under control. There is another option besides Hospice it's called Palliative care but you will have to check out both and decide what would work best in your situation. I think one of the big differences is with palliative can you can continue to receive treatments whereas with Hospice care you can't. So you can continue receiving treatment with palliative care and it can be a good option because some use something like immunotherapy to help extend their life longer. No matter what you decide work with that organization on things like a hospital bed if needed, medications, pain control, and any other needs.
Here is a video that may help and I will put a couple of page links below explaining both quite well. If it helps or you think you need it get her care team involved in any of the processes you need to, I am sure they would be glad to help you.
Palliative Care: Improving Quality of Life for People with Serious Illnesses
Also here are 2 page links--
What Are Palliative Care and Hospice Care?
What are the Differences and Commonalities Between Hospice and Palliative Care?
I hope this information helps you and I know at this time you have a lot on your mind and are trying your best to help your sister. The most important thing right now and it is what I would do besides seeking care and comfort for my sister is Pray, Pray, Pray. I would look to God and seek out KJV Bible references for just this kind of situation. Search the internet for your situation referencing Bible verses for comfort, help, and hope. [Edited by CSN Support Team]
I will put your sister on my prayer list, please give us her first name if you don't mind and I can pray for her more personally.
Wishing You The Best
Take Care, May God Bless & Watch Over You
Russ
NEGU (Never Ever Give Up)
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Thanks you so much for getting back to me. About a month ago, I went to the radiation oncologist appt with my sister and was told that the cancer was not getting better but also not getting worse after Immuno therapy (she got multiple radiation therapies before). The Radiation oncologist said that she wanted to do a more frequent treatments (twice daily) for 6 weeks but at much less doses so my sister would not have that much pain like the first cycles. She also recommended to see the neurologist in Phoenix AZ (my sister lives in Flagstaff AZ) to evaluate if a surgery could be done. There is a cancer spot at her nasal cavity that is so close to the brain. She mentioned that it is risky to do surgery there but she sent my sister to neurologist anyway.
But since she got Covid, her health becomes very weak, i'm not sure if she can make it now to Phoenix for the appt, which is this Monday 9/11/2023. I wonder why it happens so fast? I think the hospital sent her home because they are done with the covid treatments. But the way the nurse talked to me is like my sister is going away soon... I tried to get with the radiation oncologist for more information but i couldn't get into an appt...
What should I do now, should i bring her back to the hospital? She coughed a lot, and a lot of mucus on her throat. she is getting weaker and weaker...
Oh God please help us!
Hoa is my sister...i created this for her. I'm her brother Tri.
Thanks,
TN
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Hello Tri, thanks for getting back to us.
I can tell you are upset but for yourself and the sake of your sister, you need to stay calm and think straight.
I can not give you medical advice but I will help as best I can from a distance.
I am realizing you are dealing with multiple things going on with your sister so you may have to deal with one thing at a time.
It looks to me like they have the cancer on hold and stabilized for now with the immunotherapy.
Did your sister receive the 6 weeks of treatment from the Radiation Oncologist?
If you are comfortable with your radiation oncologist and her recommendation of the neurologist in Phoenix AZ then that is a good scenario. As I stated earlier you need to be going to a major hospital or cancer center that deals with these situations and has expertise in them. Do you feel comfortable with the neurologist you are being referred to and trust your radiation doctor to refer you to the needed care and doctors?
I say this because not just your sister but all cancer patients on here need to get this cancer the first time, many times it is a one-shot deal.
Since your sister is getting weak someone in the family needs to escort her. Is someone helping her?
If she is strong enough get her to the appt. in Phoenix if you are comfortable with this referral.
If she is too weak you may have to postpone the appointment and make it for a later date. She needs to go through this COVID and beat this right now and get back to being strong enough to go to Phoenix. At least looking at your situation I would say get through the covid and then back to tackling the cancer with the appt. in Phoenix.
Is her care team supporting her and giving you folks any guidance and help at all?
Is she getting enough food each day through her feeding tube, She needs nourishment and calories to fight this cancer and covid. Make sure she is getting plenty in and taking meds for whatever she needs so keep on top of the food she takes in, the meds she needs and she will need to rest as much as she can but still be mobile. And when she gets better enough to make the trip to Phoenix get her there.
Keep the phlegm cleared by spitting and have her rinse with salt and baking soda mix and see if that gives her some comfort. I will put the recipes below. She may need to sleep in a recliner or propped up so it doesn't choke her. It will help her to possibly cough less.
If you need help call your doctors tomorrow, I know it is a weekend but they usually have someone on call. As far as her going back to the hospital I don't know your entire situation but you may have to give this some time especially for her to get through this covid. Sometimes we just have to do the best we can and then Wait, and that can be the hardest part.
She is fighting a battle on two fronts, this is a difficult situation but encourage her, pray for her, and with her. I have her on my prayer list. Tell Hoa in no uncertain terms that she can fight this and get through this. Tell Hoa to keep fighting and Never Give Up. I myself was near death and didn't think I would make it but I am only here By The Grace of God typing to you. He got me through it, when I had given up God took over. So trust in God and trust in your medical team and he will work through them.
I can't directly tell you what to do, these decisions are for the family and their physicians.
Wishing You The Best
Take Care, May God Bless & Watch Over You
Russ
Mouth Rinse recipes--
Salt and Baking Soda Rinse Recipes
Soda and Salt Mouth Rinse
1/4 teaspoon baking soda
1/8 teaspoon salt
1 cup of warm water
Mix well until salt dissolves. Rinse your mouth gently, being careful not to swallow the mixture. Follow this with a plain water rinse to clean out any remaining salt or soda.
Soda Mouth Rinse: A Good Rinse for Before You Eat
1 teaspoon baking soda
1 cup of warm water
Mix well to dissolve the baking soda. This is a good rinse to use before and after a meal because it may soothe any mucositis pain you have, making it easier for you to eat well. Swish and spit, but don't swallow this mixture.
Saltwater Mouth Rinse
1/4 teaspoon salt
1 cup of warm water
Mix well to dissolve the salt. This saltwater rinse is close to the natural chemistry of your own saliva. This may make mouth sores feel better. Rinse well with plain water to remove excess salt.
Salt and Soda Rinse for Gummy Mouth
Some chemotherapy drugs can increase the acidity in your mouth, leading to thick saliva that can be very annoying. This rinse works well for "gummy mouth."
1/2 teaspoon salt
2 tablespoons baking soda
4 cups of warm water
This rinse will help to neutralize the acid in your mouth and will help dissolve or loosen thick, gummy saliva. Don't drink it, just rinse and spit it out.
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Hello Tri,
Russ has given you the best advice anyone can give. Your sisters cancer is not a common cancer. Go to hospital that has many patients like your sister. I traveled to NYC and stayed for free at the Hope Lodge (ACS) while getting treatments at NYPres. Most hospitals have social workers that can provide support. Your sister is a hero and I will praying for Hoa too.
I just completed chemo and radiation after surgery removed left tonsil and 30 neck nodes.
I.C.,
Lee
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Thank you very much Lee and Russ for your To-The-Heart advices.
I really like to stay calm...the problem is I don't have enough medical knowledge about the illness and the treatment, as well as all the options out there so I can't really decide anything for my sister's treatment. All I do is to follow whatever the nurse's or Dr's suggestion to do, except the give-up option.
Russ, my sister will be escorted to Phoenix by another sister, Barrow Neurological Institute (I heard this is a very good place for head and neck treatments) for consultations but now I'm not sure if my sister can even make a trip there as she is very weak. We already postponed one 2 weeks ago. Her feeding tube is now having a leak and it might get infection I'm afraid (although she does have intake from it). I don't know how to get it replaced as one of the nurses mentioned that no one is going to replace the tube for her current condition. Do you have any suggestion on what to do in this case? my sister just lost her voice also. All she can only communicate to us by writing. She has to take Morphine every 3 hours for the pain... is this ok also?
Let's say if she is here in Phoenix for the neurologist consultation, should I take her right to the emergency in there too so they can replace her tube?
Russ, I have asked my other sister, who is giving up work and stay 24X7 with this illness sister, to mix the solution as you mentioned for clean her mouth. Thanks for the tips.
Thanks very much for your advice. It helps me a lot, medically and mentally. I'd really appreciate it.
TN
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Tri, not to worry, I was in your shoes when I got my first cancer. I just wanted it gone and that is what I did follow my doctor's instructions. Thankfully I had an excellent ENT directing me, making appointments, and guiding me as to which way to go. Also, I was treated at a very good cancer center in Lancaster, PA.
You are doing fine, Follow the doctor's instructions but be open and looking for other options and advice.
Your sister's situation is a bit complicated so the thing I think is a good idea is don't try thinking of what her situation all encompasses but break it down into compartments such as what she needs done now, what would be next, what is not pressing and can be put in the background for a while. If you think of the whole thing in your mind at one time it can be overwhelming so break it down when you can.
I will answer the way you have written and listed, typed things.
Tri I am glad your sister will be escorted to Phoenix she will need that. It is good that you have another sister, who is giving up work and staying 24X7 with this ill sister. Hoa is your familys focus now and to do everything you can to get her through this.
Barrow Neurological Institute I looked them up which you can do also and found they do in fact have a very good rating. In fact very good.
In this most respected of all national hospital rankings, Barrow is ranked #11 in the neurology and neurosurgery category, making it one of the elite leaders in the United States for this specialty.
As I said earlier she needs nourishment, liquids and rest right now to get through this covid thing and get well enough to go to Phoenix.
As far as the feeding tube goes if there is a chance of infection is it coming from around the feeding tube area on the outside? Is there red tender-looking tissue around the feeding tube that bleeds easily? This can be granulation tissue and can easily be treated with Silver Nitrate Sticks
As far as the feeding tube goes if there is a fear of infection they can give her antibiotics to fight infection. if your doctors suspect an infection they should prescribe a round of antibiotics, which is usually for 10 days.
Also as far as feeding tube goes they can be repaired sometimes, I am not sure where or why your sister has a leak. Have the proper people looked at your sister's feeding tube to see what they could do about it?
You stated: that one of the nurses mentioned that no one is going to replace the tube for her current condition. That is because they would normally have to take her into the hospital and put her under to install a feeding tube. But in her case she already has one in. I am assuming she has what they call a G-tube in which has about an 8 inch hose on it with a stop clip. Such as below or similar--
To replace her feeding tube can be done in an office visit. You see from the picture above that it has a rubber bolster on the inside to keep it from coming out. But they make a couple of types of feeding tubes that have a balloon on the end where that bolster is on the one she has now and once installed is filled with sterilized water and that is what stops it from coming out. They just pull the old tube out and put a new one in and inflate the balloon unless there is a reason they can't pull hers out. So in the office, and she doesn't have to be sedated or put under it is a simple procedure to pull out her feeding tube and insert a new feeding tube or she could get what they call a Mic-Key button and they just inflate the balloon inside with sterile water and that is what keeps it from coming out. I am surprised the nurse didn't know that. Below are images of the replacement possibilities with the inflatable balloon--
G-tube with balloon
The two types of G-tube one with a bumper and the other with an inflatable balloon to keep it in--
And here is the low profile Mic-Key tube or button as some call it where all you have is a small part on the surface and you insert a tube into it when you want to use it.
Installed Mic-Key Button
Mic-Key Extension tube you plug in when you want to feed--
Here are feeding tube videos replacing a Mic-Kee--
And here is another showing a gal replacing the feeding tube herself--
Sorry, I tied up so much time on the feeding tube.
Sorry, your sister lost her voice and now has to write everything. As far as the pain meds it is best to keep pain under control no need for her to suffer.
I hope this helps, feeding tube should not be a big issue.
Just remember to take one thing at a time and pray, pray, pray.
If it is possible at times with H&N cancer and treatments you have to push on even though you feel like you can't go a bit farther. Make your sister aware many have traveled this road before and she is going to have to push herself to the limits of what she can stand. It is very difficult at times but she must go on if possible. This I am sure is the hardest thing she has ever faced in her life I am sure. But with faith and a good family like she has to support her and good medical people like at Barrow Neurological Institute, I think this is doable. There are many issues involved but taking them on one at a time will work.
Here is a short video of a woman who went through a tough cancer battle and she was up against difficult odds but stuck with it and made it through. This always inspires me even though it is not head and neck cancer--
‘Just never give up’: message from a cancer survivor
So, Wishing You The Best
Take Care, May God Bless & Watch Over You
[Edited by CSN Support Team]
Trust
I always recommend lots of prayer and trusting in God, and being reconciled and sanctified with God.
NEGU (Never Ever Give Up)
[Edited by CSN Support Team]
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Russ,
I don't know who you are, but from what you have said so far after hearing my story, I think you're already a God, at least to me... You've made me feel that that is still hope out there. Again, Thanks very much.
I will go to see the Dr. at Barrow Institute tomorrow with her... I hope she can make it there, with a 2:30min drive.
God please help us through this.
TN
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Thanks for the response, Tri. But I am not a God, not even close to it, just an average guy, a mechanic. There is only one God, the God of the Bible, the God of Abraham, Isaac, and Jacob. I have experienced a lot of different things and also different medical appliances. I have had 3 cancers and have had plenty of treatment experience plus what I picked up on here from the different variations of H&N cancer. I just try to use my knowledge of this stuff, what I know and have experienced, the web pages and videos I have to reference for people and of course PDFs and documents to help others with H&N cancer. I am so glad you realize there is still hope because there is. There is always hope-NEGU (Never Ever Give Up). I have Hoa and your family on my prayer list and there are a handful of people on my list who are in more serious situations similar to your sisters and this group of people I pray for several times a day.
May God Speed and Safety be with you on your trip to and from Barrow. Praying for God to give you traveling mercies and protection. Also praying for a good and positive report from the doctor there and that they will be able to treat her and get her through this tough time in her life. She is so blessed to have a supportive family. Also, get the feeding tube repaired or changed to a new one. This is her lifeline and it needs to be in serviceable shape. She needs all the nourishment she can get, plenty of hydration, and rest. Hopefully, she can sleep during the ride tomorrow. [Edited by CSN Support Team]
So I am wishing your family a safe and successful trip tomorrow with many positive results and a bright outlook moving forward.
Wishing You The Best
Take Care, May God Bless & Watch Over You
Russ
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Hello Russ,
I just got home after a long day with my sister. I thought I should give you an update. She had made it to Phoenix for appt at Barrow Neurological Institute. I have a very good feeling about the Dr. I've met. He said he needs an MRI to see how close the cancer (spread to the back of her nasal wall) is to the brain. He said for a healthy person, it is 50/50 for chance of survival, and for my sister it will be lower given the current status of her health, and for those 50% lucky one, it is a long recovery since they have to restructure the whole face... sound like very intensive/extensive to me.
He said we should balance out the quality of life after the surgery, and the longevity that she might get...He also recommend seeing all the Radiation and chemotherapy oncologists to evaluation, all in house at the same hospital. I think this is the a good thing. I think we will probably go with the radiation route
he wanted to send her to emergency today (I also want to do that) so they can get all the MRI, lung, liver, kidney, heart checked out...all in house and they get every thing done quickly. So far, I'm glad with the decision we made, sending her to Barrow Neurological Institute. We are waiting for the results. I'm still praying. Please keep my sister in your prayers also.
Also, her feeding tube was also replaced this morning in flagstaff... took just 5min. I'm not sure why they did not do that before.
Thanks,
Have a good night!
TN
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Good morning Tri,
God answered my prayer for your sister. Keeping everything in house at BNI is a great idea. My first biopsy was came back negative so I had it sent the lab at NY Presbyterian where they found the cancer cells and identified the genetic marker. The doctor back home who took my biopsy did a great job but the lab did not. Your sister needs best care where there are no weak links. I would ask to speak to a social worker at the BNI to see if they can help with housing or for any other support your family may need. Don't be afraid to ask. I would never had been able to afford the care I received if the ACS did not provide a free place for me and my caregiver to live while going through treatment.
Praying for her comfort and recovery.
Lee
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Hello, Tri, I am so glad to hear she was able to make the trip to Barrow, I know you were concerned. It is great that you have good confident feelings about the doctor you met and talked to. So it sounds like she is getting all the scans she needs now for them to evaluate, testing, procedures, and radiation at Barrow is that correct?
I understand from your writing that you are taking her back there today for an emergency room visit to get many things taken care of and to help in the evaluation, testing, etc.
And her feeding tube was replaced in 5 minutes Yay now at least that is one less thing to worry about. She can now get nourishment, hydration, and meds in and not worry about a questionable feeding tube. If you ever need info on pill grinders to grind up pills to put through her feeding tube let me know I can give you recommendations.
I am so glad for you that the process is started and you have hope now. It seems you are in good hands at Barrow with a good proactive doctor. My prayers for Hoa and your family continue. Please keep us updated. In the meantime, prayers continue.
Take Care, May God Bless & Watch Over You
Russ
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Good evening Rush,
I'm so sad and desperate to let you know that the hospital Dr. had let us know that there was nothing they could do extra to help my sister on the covid side as all the med did not response and my sister is dying.
We decided to bring her home for hospice care and spend some good time with her as a family before she leaves us.
The problem is I am not ready to accept this reality and my heart is in pain at every second.
Still, thanks so much for your advice, it helps give me some hope.
TN
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Tri I am so Sorry.
This is not the outcome we wanted or hoped for.
Cancer is evil.
Hospice will help you make her comfortable at home.
I understand it is hard to accept I will pray for you to enjoy to the fullest the last days with your sister.
May God Bless and Watch over Your Family.
I am sending love and hugs to Hoa & your family
Take Care, May God Bless & Watch Over You
Russ
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