positivity
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Hello Nancy,
Do anything that helps! I also am experiencing the toughness of this with my mom, so I can relate.
Please don’t rush or think it’s wrong or somehow you should not grieve for a long time. Go at your pace and know it’s okay to look at the positive memories with your mom. I hope the therapy helps you to live daily in peace.Thanks so much for these articles. It’s important for patients to know this information after the shock of diagnosis and sometimes we are so involved in the treatment that these side effects are overlooked. Good to me informative, as this is the stage I am going through right now, but was aware of it. It’s tough, and you would think medical research can treat this symptom.
Marion,
You have been a tremendous leader, inspiration, and help to many on this board. This will remain forever. At least all can relate to what you will undergo. Thank you so much for the encouragement and responding to my inquiries. Take care of yourself and use all the knowledge and strength you provided everyone. We look forward to hearing from you again.Dear Hopeful,
I totally understand your experience, and as stated above there are many unexpected events and always hard to determine what will happen. Weight loss and appetite suppression is a given and we are always grateful if my mom just eats something without complaining of being full or will get a stomach ache. I am trying the plant based smoothie drinks (forgot name), similar to Ensure, but it may be a little better. Also, yogurt with hemp seeds for extra calories. Again, it’s still a challenge, but always try to see what to add to the diet as the person’s taste buds also change. One month they may like something then the next they hate it. We are relying on palliative care as no treatment is feasible at this point. You should look into support care for his symptoms and question if the chemo is very useful or more draining for your husband. Someone mentioned on here about a feeding port if one is having extreme difficulty getting nutrients. Has this been discussed?Hello Javaboon,
Thank you for joining our board and sharing your experience. This is the time to become knowledgeable and know what is offered as treatment. Get several opinions, ask questions, and don’t be afraid to walk away from a doctor who makes you uncomfortable or is being pushy about a particular treatment.I know it is difficult in the beginning to not be confronted by negative information or poor prognosis reports. Do not focus on that, but focus on how you can offer the best support for your mom and take it day by day. You will drive yourself mad if you get stuck in the quantity rather than quality of life. I am also in your position as my mom is in the palliative care stage, and this is with acceptance and understanding of the long road we took to get here. This is what works for us, and as you will learn every individual is different on how they respond to treatment or what they can be offered.
She is fortunate to have the stents as sometimes it’s hard to put stents for some people.
Fay,
I think most of us have had similar experiences of negativity and poor communication from doctors. I understand they must be honest and upfront, but at the same time the harshness of how some communicate can be controlled. I don’t even want to list some of what I have heard over the course of the last year. It’s not psychologically good for the patient either as it makes them feel worse when they are already confronted with bad news. It may be lack of regard or training on how to communicate with patients when circumstances are not good, but at the same time give some encouragement or hope.
I am glad your mom is doing well, and try something to uplift her mood.Katrina,
Thank you for sharing, and it’s always great to have stories of treatments that are working.Thanks for all your input.
My oncologist’s office said the blood sample is not as thorough as a tissue sample which tests 300 different mutations. We may not move forward anyway, but will look into the suggestions stated in the above posts.Thanks Molly for sharing more details. I wondered how this worked, if it is a device or something you have to carry throughout day. It makes it more convenient since it’s a device that can be activated only at night while asleep. I can definitely consider sometime in the future. All the best for your journey, and continue improving.
Jonas,
My deep condolences to your family. You are an amazing brother for doing everything you can and Myrna’s energy will always be present. I’m glad she was with family.Thanks so much for everyone’s response. The doctors have engrained in her mind about small portions of meals throughout the day, so that is set for her to be careful and not overeat. I don’t know if it’s her actual appetite saying no more or her fear of feeling sick or getting a stomach ache to stop eating. We worked on a healthy diet to increase her immunity and health, but it is to a point of allowing her cravings dictate what to eat, so she can just eat. So, if she wants the cheese with white flour bread, so be it. I was afraid that dairy and meat aggravates the GI system and had her eliminate these foods. Now it is what will make her eat and still eat healthy in small quantities throughout day. It ends up being a few bites here and there.
Marion,
I am aware of cachexia and if it gets close to that, perhaps Molly’s suggestion of feeding tube, which would not be something my mom would not want. Yes, she does get emotional and cries. She wants to get better, but it’s that feeling of helplessness.Hercules,
Thank you! Again, amazing where you are today! I will entice her with food cravings she loves and not be concerned about, if it is healthy enough. I was hoping to maintain a certain weight after the first initial weight loss, but results show more weight loss in one month! My goal is to be realistic and try to get back 5 pounds, great if more!Molly,
Thanks! I questioned the stents because that is when my mom had the first drastic weight loss. She was of normal weight beforehand, so that’s why I questioned is it the CC or stents? She had CC almost three months before stents (who knows maybe more), but it just wasn’t official as in a pathology report. One of the stents was in your duodenum which can explain your weight loss. I get the side effects of cancer, but just questioned the stents.Thanks again everyone!
Hello Lainy,
Great to see you again on this board and I appreciate your experience and advice. We are at the palliative care stage and once we approach hospice, hopefully I can set it up at home. At least we have ruled out stents which are an unfortunate undertaking forever. I have accepted this nasty condition and glad many people show up to share and get this into the light of researchers. I will continue to offer support and recognize there is a limit what can be offered.Thank you.
Very well expressed Mary and Marion. Each individual is unique from how a person responds to treatment and the choices they make. It is crucial as caretakers or family members to determine what is best in our situations. That is the challenge to choose what works best for our loved one, and have hope, but also be realistic. Doctors had no problem stating the facts and letting us know that this is not a good prognosis, and I have accepted what can develop in the future. It has not been an easy acceptance, but I am at the stage.
Of course, I would like some amazing treatment to develop in the near future which has a success for many with CC, and always keep looking for possibilities. As of now, dealing with two severe conditions, we have chosen palliative care and quality of life. She gets blood transfusions, stent replacements, and maybe will have some sort of treatment to support anemia(not definite at this point). I don’t know what lies ahead, but with available information know what could happen. I am looking into pain management when the time arrives and waiting for molecular testing results.
I think it is fantastic that chemo and radiation has been successful for many. Doctors should be honest and upfront and after seeing a handful, it was nice to have confirmation that the standard treatment would not help her case. This doesn’t mean not helping other cases, but her unique situation.
Thanks everyone for sharing. I am grateful to have a community of people who share at the most sensitive moments.
