My mother's doctor told me that she doesn't have much time, I'm not ready to lose her.

Arefeh

My mother has been dealing with head and neck SCC cancer for a year and a half, she was treated in the first series, and the disease returned after three months (recurrence), and now she has not responded to chemotherapy, immunotherapy, and re-irradiation therapy. (Due to the problem of kidney failure, she could not try many chemotherapy drugs, just tried Cetuximab, Paclitaxel, Pembrolizumab, Gemcitabine). Yesterday, her doctor told me not to bother her with treatments anymore and she will not live long. My mother does not feel very well, she has a very big wound on her face that does not heal and gets worse every day and her face swells a lot. I am not ready to lose her. when ever I see her in this situation my heart wants to stop. Does anyone have any recommendations? Should we try to consult other doctors (I already have asked some) or should we accept and let go of the treatment.

scoleh

Hello Arefeh. So sorry for what you and your mom are going through. In your last sentence you asked whether you should consult other doctors and indicated that you have already asked some. Can you be more precise? Does that mean you have already received a second opinion? And if so, to what extent did it corroborate the opinion of your mother's current oncologist?

Other questions that come to my mind are:

1. What is your mother's current state of mind? Does she want to continue the fight or is she worn out?
2. Prior to the cancer diagnosis, what was your mother's state of health? Was she healthy, strong and active or were there other conditions affecting her lifestyle?

I certainly understand you not being ready to lose her. On the other hand, it's also the case that your mother has to have the will and desire to go on. The will to continue comes from within the individual or it can be drawn from external sources, be it family, friends or faith.

The motto around here is "Never Give Up." That is an admirable sentiment, obviously, but it's also true that palliative care exists for a reason.

I wish you and your mother peace and strength in the days ahead.

scoleh

Hello again, Arefeh. I copy and pasted your text into an AI app called BelongAI that I look at from time to time. The response I got back is shown below:

_I'm truly sorry to hear about your mother's condition. Dealing with a loved one's cancer can be incredibly challenging. It's understandable that you're not ready to lose her, and it's important to explore all options available.

• Given the complexity of your mother's case and the challenges she's facing with treatment options due to kidney failure, seeking a second opinion from another oncologist or a multidisciplinary team may be beneficial. They may offer fresh perspectives or alternative treatment options that could potentially help.

• Additionally, considering palliative care could help manage your mother's symptoms and improve her quality of life. Palliative care focuses on providing comfort and support, addressing pain, and managing other distressing symptoms. It can be a valuable resource for both patients and families facing advanced cancer.

• It's crucial to have open and honest conversations with your mother's healthcare team about her current condition, treatment options, and what to expect. They can provide guidance and support to help you make informed decisions that align with your mother's wishes.

Remember to take care of yourself during this difficult time as well. Seeking support from friends, family, or a counselor can help you navigate these challenging emotions. 🌟

If you need further assistance or have more questions, feel free to reach out.__

wbcgaruss

scoleh, thanks for jumping into such a difficult post in such a sensible way. I can't add much more than what you have already said. It is true, our motto is never give up but we say that still realizing there are limits to everything and it is meant to help a person be inspired to go a little farther.

Arefeh, scoleh has given you some profound suggestions and support and I hope it helps you to resolve an answer to your mother's case and give you both peace of mind. Unfortunately, not every cancer case turns out in a positive manner but they are increasing with positive outcomes as treatment continues to advance. As scoleh questioned, does your mother want to continue trying any treatments if there are any available? She may consider more treatment intolerable. Work closely with her doctors if you have any more questions. Sit down with your mother and have a communication session about her wishes in this matter. Since you have already talked with some other doctors do they verify what your mother's doctor has told you? There does come a time when you have to focus on keeping your mother as comfortable as possible and pain-free. I am going to put a couple of links below in relation to hospice and palliative care. If you contact any of these organizations locally, and your doctors can lead you on this, you will be grateful in the way they can help you and lead you through this with compassion and understanding. They deal with these situations all he time and know what you need. One of the major differences between hospice and palliative care is you can continue to receive treatments if you want to. I am so sorry you and your mother are in this most trying situation and I pray for God to give you the strength and guidance to deal with the situation at hand.

Wishing You The Best-Take Care, God Bless

Russ

Palliative Care: Improving Quality of Life for People with Serious Illnesses

https://www.youtube.com/watch?v=Y4ZsucFf41Q&t=33s

What are the Differences and Commonalities Between Hospice and Palliative Care?

https://www.vitas.com/hospice-and-palliative-care-basics/about-palliative-care/hospice-vs-palliative-care-whats-the-difference

What Are Palliative Care and Hospice Care?

https://www.nia.nih.gov/health/hospice-and-palliative-care/what-are-palliative-care-and-hospice-care

Arefeh

https://csn.cancer.org/discussion/comment/1713394#Comment_1713394

Hello scoleh, I really appreciate your support and thanks for your reply.

I consulted several doctors a month ago, before the last treatment was done on my mother and they said that there is not much that can be done and everything will eventually lead to more time and this disease will not be cured. The work that has been proposed to us is the trial of personalized cancer therapy based on NGS experiment which recommends drugs based on the person tumor and liquid biopsy and they proposed another method which is in research phase named electrochemotherapy with Bendamustine. We sent the personalized NGS test, which we will receive the answer in a month, and it is not even known if my mother will be alive until then, and we have an electrochemotherapy option, which I don't know if it is still possible for us now (It was possible a month ago but we tried another option on re-irradiation). Now I want to consult with other doctors to see if we can try another chemotherapy drug on my mother (she is currently only receiving Keytruda, which according to the evidence and MRI has not been effective).

On the other hand, my mother does not know that her doctor said that it is the end of her life, but she knows that the treatment process was not good, and yesterday she told me that she wants to change her doctor and also told me that I will get better, don't worry about me, and based on what she told me, I feel she has hope to live.

About your question of my mother's state of health before cancer diagnosis, she had diabetes and kidney problem(ADPKD) but she was strong and active. I remember during the COVID-19 pandemic, she got sick, but she didn't even need to use medicine and passed this stage in good health.

Arefeh

https://csn.cancer.org/discussion/comment/1713414#Comment_1713414

Hello wbcgaruss, I have been reading the posts of head and neck cancer forum and I know that you are so kind and answer people questions here and I knew you would answer me. Thank you so much for your support.

I explained more in my last comment about the situation and I would appreciate any suggestions. Also I need to say that my mother health situation now is like this: she has lost a lot of weight, she does eat food but not that much and sometimes she has coughs when eating (doctors told she should get a PEG tube but she refuses) and she has problems sleeping, she in uncomfortable in situations of sleeping, sometimes she sleeps while sitting and every morning she has swelling in her left part of her face. she does not have that much pain due to here last re-irradiation which has lowered the pain but before that she used pills for pain and she is weak, she walks only when it is necessary.

My mother would like to continue but we are scared that more treatment would lead to more complex problems and her health situation get worse.

Thanks for sending links in relation to hospice and palliative care, It could be helpful to know about but unfortunately we don't live in USA and I should search to see if we have these kind of organizations at our country. and I think we should consider palliative care now.

wbcgaruss

Arefeh, it sounds like you trust in your doctors and that they have been doing all the best treatments that are available to us in this day and age. Unfortunately, all cancer and cancer situations cannot be cured. People I know of in your mother's situation many times have had their cancer treated successfully as it seems your mother originally did but then later on they have a recurrence as it seems your mother has.

Since you say she is losing weight, not eating much, and coughing during eating which indicates a problem or disfiguration in that area. I imagine it is either painful to eat and swallow or some other issue but she is just going to keep losing weight and getting weaker. She is having much difficulty sleeping so that is another factor that is not a good situation. So she is weak now and the factors of eating poorly and not sleeping well are of great detriment to her situation. Anytime you are fighting cancer you need plenty of calories to maintain your weight and plenty of good rest with reasonable activity while awake. So her treatments are not successful, she is not eating well or sleeping well, has very limited mobility, and is in a weakened condition. So the trajectory she is on now is not good and she is going to continue to get weaker and worse as the situation stands now barring a miracle. Also, keep in mind if they can provide trials and experimental treatment and your mother takes them it seems every form of treatment can wear you down or have its own set of side effects thus wearing down an already weakened system.

My opinion would be, and this is what I would want, is to have a doctor present if you think it is necessary and have a heart-to-heart talk with her and let her know how much you love her and tell her about her situation fully so she knows the status of her situation at this point and she is fully aware of it. So she knows at this point the doctors can't do much more for her and realize the gravity of her situation. This you are doing in complete honesty out of love for your mother so she can make informed decisions moving forward. This does not mean she has to give up hope or quit trying if she wants but at least she knows what she is facing and can gauge her time appropriately. She has been putting up a valiant fight, this is tough stuff.

Yes, do check on the hospice and palliative care in your area or a reasonable facsimile thereof. Check with her doctors, surely being medical people dealing with others in this situation they should be able to direct you somewhere for help.

Lastly, if she is made aware she can decide how she wants to spend her final days. Quite a while back I remember another situation on this very discussion board of a similar nature, where a young lady was helping her mother through cancer and it finally ended up being terminal and they could not do much more. They made the decision to have her at home with the family where family members could visit and she could be surrounded by grandchildren and such and instead of fighting cancer up to the last she spent her time enjoying her loved ones and whatever she wanted to do and could do. She may also have spiritual concerns and end of life concerns she would want to address. You may need a hospital bed if they are available for rent in your area. They may have had hospice or some other service for additional help I can't remember. It is too bad your mother is set against a feeding tube because at this point she should have one because you need nutrition and calories especially now and with the difficulty of eating. It would mean she had one less fight, trying to get enough food down by eating.

I know this is a difficult situation and is hard to talk about, but it must be done because it is not going away anywhere. My heart goes out to you in this most difficult situation and I hope you can find the answers you need. I hope I have helped in some small way and remain available if I can do anything else. And I am hoping I have not said anything out of the way or improper in this delicate situation.

One more thing I would offer is I am for using standard medical treatments for cancer. In you case you have dione this for your mother. I would like to check out a link to a cancer story by a fellow named Joe Tippens. You can check his story out and draw your own conclusions. It seems in your situation you have nothing to lose. I also made a post on this a while back.

Joe Tippens story...

https://mycancerstory.rocks/the-blog/

Here is a recent posting of it that I made on this site...

Joe Tippen Cancer Story-Recently Shared With Me-For Your Consideration

https://csn.cancer.org/discussion/326703/joe-tippen-cancer-story-recently-shared-with-me-for-your-consideration

So I am Wishing You the Best

I am here if I can help in some way.

Take care, God Bless

Russ

goffrey

Please do not pay attention to the story shared about Joe Tippen. The medication he took has caused suffering to many people and will only compound your mother's suffering and ESPECIALLY with kidney issues. This man is a fraud and desperate people tried his therapy and have died from it. Stick with doctors and get medical advice from people who are experts in the field. Find out what your mother's wishes are. Tell her what her medical situation is and let her decide what she wants to do. You may not be ready to lose her but I know you love her and wouldn't want her to suffer just to be here.

CSNSupportTeam

Hello everyone. We just wanted to let you know that we removed the previous posts since they were not related to the original poster’s question.

If you would like to continue your previous discussion, you can visit the following link https://csn.cancer.org/discussion/326703/joe-tippen-cancer-story-recently-shared-with-me-for-your-consideration#latest

Please remember that the purpose of this board is to provide emotional support and to share personal experiences related to your diagnosis.

Thank you all for being a part of the CSN Community.