› Forums › General Melanoma Community › Update on sks2019
- This topic has 9 replies, 8 voices, and was last updated 3 years, 7 months ago by
MelMel.
- Post
-
- September 22, 2020 at 6:49 pm
Update on mom : She is in ICU for last 7 days. yesterday was the first day she opened her eyes little bit when i called out. She was admitted last Monday as she was having diffuclty breathing and was confused. We took her to hospital to find out her kidneys have shut down
Last Monday I was told not to opt for ventilator and let her go. I coudnt let her go. I insisted on getting her in ventilator. Four hours later I was told her kidneys have shut down and I should let her go. Again I insisted on getting her in dialysis. I was told she is paralyzed. Tuesday she was responding to my calls and moving her legs and feet. Wednesday- breathing without a ventilator and they are planning to take her off the dialysis. It has been very hard to be with her in the ER listening to the docs that she is passing away and I am making her suffer. I wonder they teach empathy in the medical school. The same doc who told me all this comes back and tells me this is just temporary since she has cancer in her bones she will be back to this condition in few months. I wanted to ask how many folks here had melanoma in bones and other organs but are still here ? I know fighting with this disease is not easy and I have lost so much personally and professionally to care for my mom but I would still want her to get well and be with me as long as possible. I just believe if it’s time God will take her but I will fight for her until I can. Please share your story if you have fought it through stage 4 and still here.
- Replies
-
-
- September 22, 2020 at 9:12 pm
In March 2016 I had melanoma in several bones but not in any other organ. Ipi/nivo immunotherapy made my bone cancer disappear.-
- September 22, 2020 at 9:43 pm
I want tell you the story about my father.
We fought through his cancer.
He was diagnosed with gastrophageal junction cancer 4 years ago. At the beginning of his treatment they did chemo and radiation, he could not eat anything he was feed through tube feeding.
He was pretty sick in and out of the hospital. The formula he was getting wasn’t working for him. He would get back to the hospital and he would get different formula and he would get better. So on a 4 th time in the hospital he got C Dif infection. He had a new PCP at that point. His old one who knew him changed the jobs. That doctor decided he had no chance anymore and wanted to put him to hospice. Everybody on his team agreed. Oncologists, surgeons, radiation doctor, everybody. . I said, no way.
I took care of him at home. I asked them to change the formula he was getting for the one he got at the hospital. It was easier to absorb, he had IBS. Nobody even thought about changing the formulas til I asked.
I brought him back in a month. He was as better, lab work looked good, infection cleared off. I said now you will do the surgery to remove the tumor?
They looked at him, at me and said yes.
He is still around 4 years later. He had several rounds of chemo and radiation and surgeries since.
I m the melanoma patient now and his surgeon is my surgeon. He listens to me!
My point is that it’s very personal decision. She has you, she perked up. Maybe there is a chance?
Depending on how is her overall health it. Meaning her heart, lungs, kidneys. If they are in a decent shape than there is a chance.
There are lots of folks here who were in the same situation as different treatments worked, I think. It depends If can she survive being blasted with all this treatments they have?
Does she want to fight?
Hang in there. Hugs!
-
- September 23, 2020 at 12:25 am
Oh, Sweetie. I am so sorry for all that you and your mom have endured over the past 2 years and especially this most recent horrific time. All of the decisions you are facing are intensely personally. So, it is very hard to offer any advice as to what you “should” or “shouldn’t” do. Yes, I have survived stage III then stage IV melanoma (in brain and lungs – not bone) for 17 years. Melanoma is a beast. Mucosal melanoma is even more so. Unfortunately, there is all too often no rhyme nor reason as to how things go. At this point, all you can do is advocate for what you think it is your mom would want. I suspect that the doc’s comment re paralysis was due to the fact that patients are often placed in medically induced paralysis through the use of drugs in order to help them tolerate the ventilator. Once the drugs are removed, movement returns. I guess I only have two recommendations –1. If possible, talk to your mom. If she is able, ask her what she wants. Does she want to be put on the ventilator again? Does she want to do dialysis again? If she can, let her lead you as to what she would like done in the future. I have had those hard conversations with families. I have had those hard conversations with my own children and husband. It is not easy. I have experienced enough in my own travails to know at least some of the places where I would draw the line. My line may not be the line anyone else would pick. But, if your mom can give you any of her preferences it may make you feel more confident in choices you make on her behalf in the future.
2. I think consulting hospice could be very beneficial. They are no longer a resource that is used just before the death of an individual. Rather, these are doctors, nurses, techs, pharmacists who are well versed in helping patients manage pain and a wide variety of difficulties including nutrition, mobility, and just about anything else that can happen to a person. They make difficult situations much more LIVEABLE!!! – for both the patient and their families. There have been many on this forum who have availed themselves of this service and found it beneficial.
I’m sure I’ve told you before, but your mom is very lucky and blessed to have a daughter like you in her corner. I hold you both in my heart. c
-
- September 23, 2020 at 7:19 pm
Very good advice.
-
- September 23, 2020 at 1:13 am
Hello my dear,I have been taking care of my mom, she is 73 years old now, she has been stage 4 from the gate, in mid 2018.
We have seen a lot together, many things have worked and many have failed, but we keep fighting.
I know how difficult it is for caregivers and I feel the responsibility on your shoulders, and your mom is so absolutely lucky and blessed to have you around.
In my experience I have 4 pieces of advice
1. People recover at all stages, it is possible and it happens all the time
2. Doctors do not know everything
3. You can not rationalize with Melanoma, it is freaking random, and personal and chaotic. so just keep fighting until you get lucky with it, never think about the past or what you could have done better, or anticipate the future.
4. Stay well, your mom needs you well. As much as you can try to eat, sleep and take breaks.I will keep you and your mom in my thoughts and prayers, I hope it all works out in the most wonderful way for both of you, very soon.
Love,
S. -
- September 23, 2020 at 8:26 pm
Spring of 2017 I had 7cm tumor in my sacrum and others on my spine. I had alot of nerve involvement…not a great prognosis, pain, paralysis, then death. Radiation then 2 yearsof Keytruda and Denasumab, fast forward I am now NED! Sounds like you are a geat advocate for your mother. Keep up the fight SKS! -
- September 24, 2020 at 5:20 am
I completely understand you and my heart goes out to you. All previous replies had great responses. I had my grandmother fight heart disease for 48 years. The last six she lived with me and I would not give up on her. She had a heart attack and did not want to be resuscitated. I convinced her to have a pace maker. Two years later she had a stroke. She required around the clock care and lived another year before she passed away from pulmonary hypertension at the good old ripe age of 94. My grandfather had glioblastoma and 6 weeks after diagnosis he was gone. These are the most difficult life decisions. What is important to know that you did all you could. At some point, it will become obvious and you will clearly know when your mother has had enough until then I would remain fighting. My mother, who just turned 80 beat both thyroid and lung cancer.
Hugs,
Melanie
-
- You must be logged in to reply to this topic.