Treatment Has Begun // Week 1
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I am so extremely sorry, and as stated before know the anguish you must feel. Can you provide her with happiness and anything she enjoys. Think about comfort. How about adoptive cell therapy or is that too late in the stage? Can they give her immune boosting medications or B12 IVs to give energy while she is here? These are just some brainstorming from me, obviously I am not doctor or nurse.
Joe,
The deep anguish you are feeling is a testament to the strong bond you have with your mom. She is so lucky to have such a caring, thoughtful son.
Families in similar circumstances, as you may see from postings on this board, can find that entering hospice increases the patient’s quality of life and sometimes even the length of survival. Some patients might even come in and out of hospice as their conditions fluctuate. So it is not so much an act of giving up, but rather choosing a standard of care that may be more helpful in addressing your mom’s present needs.
This is of course a difficult step to be thinking about, so I would encourage you to ask your mom’s doctors if you have not already done so, what exactly her care would be if she shifts to hospice. Your mother may find that the proposed care will help her regain strength or diminish pain. She may decide that she wants to try hospice, or she may want to find a different doctor who can come up with a plan for further treatment.
Please know you, your mom and your family are in my prayers. Regards, Mary
UPDATE:
I can’t believe it….today the doctors finally brought up hospice and said they weren’t going to even consider any more blood work or treatments given how poor her blood levels have continued to be. The reality for my mother and our family has hit us hard and it only felt like yesterday that I even started using this discussion board….I BEG OF ANY and ALL OF YOU if you have any last ditch ideas to help my mother please feel free to write me. She doesn’t want to give up and made it clear that she wasn’t ready to die. As her son I have to withhold that wish of hers and exercise any and all options that may be left. I asked the doctor about a liver transplant thinking that could prolong her life for another couple months but the doctor said no. I’m throwing out all ideas at this point. I don’t want to be the one to tell her that there are truly no other options…she’ll be getting a catheter put in to drain on her own to avoid her having to be at the hospital everyday…..I’m so numb at all of this I’m so lost. I’m going to lose my mother at the age of 61. This can’t happen
JoeJoe,
You are an amazing son to help your mom fight this cancer. You are present and that is what matters most. My mom is going through the same journey, and know the experience painful emotions.
What else will your medical team do at this point?Dear Joe, I am so terribly sorry to read your post about Mom. You are an awesome son as we can tell by your posts and your love and concern for your Mom. Sadly It is normal to feel as you do. Has the ONC recommended Hospice to help Mom and the family get through this journey? They are of great help and they give you the time to spend wisely being with Mom. I am thinking of you often and am sending prayers, strength and love to help you all along. Make the most of what ever time there is and we are all behind you.
Dear Joe,
I am so sorry to hear all of this. I agree with Marion. It is normal that you feel as you do, but know that you are a good son and have done the best that you could do for mom under these circumstances. Enjoy the day with your mom & family today. These are memories you will cherish. Thinking of you on this special day.
Hugs,
DarlaJoe …..I am so very sorry to hear of the turn of events.
This Easter day will be unlike any others as you are together to cherish your togetherness. This is a very precious time, which forever will be embedded in your mind and soul.
Please understand that it’s only human to tell yourself if only you had done something differently, this never would have happened.
We take on the responsibility of protecting our parents from illness and death and feel like failures when it turns out otherwise and it’s only human to tell ourselves if only we had done something differently, this never would have happened.
The reality, dear Joe, is that we have little control over the lives of those we love. You left no stone unturned to help guide your Mom’s illness, yourMom raised a devoted and beautiful son, she must be so very proud of you.Tons of hugs,
Marion
Thanks as always!
UPDATE:
Doctor visit on Friday was that of more depressing news. Platelets were still at 27 after she was infused with two bags of platelets the prior day and they removed 2 liters of fluid from my mother’s abdomen…..I didn’t have to do too much research on my own to figure out what is happening…I’m the most fearful yet and I’m trying my best to keep on happy, positive face but I’m starting to feel the weight of all of this. The doctor has said given the fluid that they would statistically say she has about 4-6 weeks remaining…..
What I can be grateful for is that Easter is tomorrow and the family will be together with her on this special day. Just hope the day never ends.
As always thank you all for your support….I honestly feel like the worst son ever and feel more helpless than ever before. The last thing a son wants to do is let his mother down and I feel like I am. I’m sorry
JoeDear Joe,
If your mom is truly in unbelievable pain, its time to see a pain management specialist. They may offer a celiac plexus block which will control the pain and may reduce her need for opioids; however this block does come with unpleasant side effects and complications (the most common are diarrhea/flushing) so its usually a last resort type block for liver/pancreas/stomach cancer pain. Here’s a link from cleveland clinic explaining a bit more:
https://my.clevelandclinic.org/health/articles/celiac-plexus-block
Dearest Joe, YOU GOT IT! Absolutely walk away but not until you find a new ONC. Joe, we had a very bright and wonderful Moderator on this site named Percy. He was a Pharmacist at a BIG hospital in Chicago which I believe was Northwestern. My feeling was if Percy as a Moderator and Pharmacist thought it was the best perhaps it would be a good place to look in to for Mom. I am thinking Gavin or Marion can help on this, I hope.
One more thing is to listen to your gut it will mostly often steer you right. If I was treated like you have been treated I would be right out the door. Gather together as much of Mom’s records and tests as you can so you are ready to make the change. It is a good feeling to have when you can feel you have left no stone turned!Joe,
By all means if you feel uncomfortable or not getting complete support from your medical team, find another group that is able to work with you. If you know a treatment is not benefiting your mom and making her worse, you should not hesitate to stop it or speak up and express your thoughts, even stopping it. You should seek alternative treatments. Palliative care is crucial and should be offered from the beginning when a patient is diagnosed. I have encountered doctors who I decided were not the best or should I say arrogant, and I walked away. That is correct for you are the person who sees your mother daily and see changes whether good or bad, and are able to determine what is needed. I am on the same journey, so I can understand the frustration. You are making great decisions and not solely relying on medical staff.Daria, Gavin and Lainy,
Thanks for your feedback. We’ve gotten 2nd and 3rd opinions prior to starting the first round of treatment. Are you suggesting to move forward with the same exercise now that we’ve tried two treatments without luck? If so I agree. I’m starting to lose faith in her facility and tired of getting attitude from her nurses when I talk about palliative care. They talk to me like I’m crazy yet I’m the one working on my mother making sure she isn’t bloated and stuffed up with all the narcotics she’s on which in turn is making her the most uncomfortable. The tough thing will be getting my mom in the mind set to do this. Fingers crossed.
Thanks
JoeDear Joe, not to be redundant but as started above we are big believers in 2nd, 3rd and even 4th opinions. This is important with anything but especially with a cancer so rare. No ONC worth his weight will deny another opinion. As always wishing you and your Mama the very best.
Hi Joe,
Sorry to hear this news about your mum. I just want to say that I so agree with Darla here about another opinion for your mum if possible to see what other treatments may be an option here and also about pain management. Pain can be and should be managed and that is very very important here. Please let us know how things go and good luck with everything.
My best to you and your mum,
Gavin
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