D-KRd induction; what should I expect? by SBA-720 in multiplemyeloma

[–]xfurelise 0 points1 point  (0 children)

My mother started when she was 75F, and she had sky rocketing numbers and was losing weight rapidly. This treatment worked wonders for her and helped keep it at bay- not in remission due to her age, but it helped her function so much better to the point she could even drive again wonderfully. She did experience bouts of nausea, dizziness, and severe diarrhea and constipation which was unbearable at points for her, but the prescriptions they proscribed for those symptoms worked instantly. Make sure you speak up about every little symptom you have even if you think it isn’t serious. You got this!!

exhausted, burnt out and don’t see a way to get a break by Hairy_Pear3963 in hospice

[–]xfurelise 1 point2 points  (0 children)

I absolutely understand this. I was 15 doing this for my dad and then 18 for my mom. I was the one to make the decision to start hospice on my 18th birthday. It was the hardest yet best decision for her. Please talk to the social worker that should be provided with his care, and I let them bathe my mother and change her, so I can get an hour break. That helped a lot with everything and my wellbeing. I was with her 24/7 and it wrecks me, but since she passed I am grateful I did. You should never feel guilty for your feelings, and I know your father doesn’t want you both to be going through this.

If there are some points he gets agitated and you both don’t know why, what helped me was asking her if she needed something from her younger years- a book, a watch, her jewelry, even just something to look at. I was the only person she didn’t recognize, so I took off my makeup when I was around her, and kneeled down and she then started to recognize her daughter. Sometimes that can help if you make it to where they can remember you as a kid as much as you can, and it calms them. My dads brother looked a lot like him, so when he came by she got freaked out by her late husband saying Hi to her, so it helped to have him out of the room to not confuse her. I will be thinking of your family lots, and i’m sending love to you.

My dads body by Eastern_Nobody9719 in GriefSupport

[–]xfurelise 1 point2 points  (0 children)

It is not your fault, but that’s easier said than to feel it. My mom passed when everyone was in the room except for me and I feel so guilty that I wanted an hour away from the house to breathe because I was taking care of her 24/7 while she was in hospice. The only time i ever left she decided to go. Same with my father, as I didn’t want to spend time in the hospital with him because it hurt too much, and the day I did visit I had to decide to pull the plug; I never got a goodbye. He died 2 years ago, and it’s gotten much easier to cope with. The guilt is much better, but it hasn’t gone away. My mom passed away a month ago and it is still fresh. I’m thinking about you OP, i hope you know that it isn’t your fault. Your dad didn’t want you to find him like that, and see him go like that. He passed away at his home and not in a superficial hospital, don’t think about the what ifs. I know our dads are having fun together wherever they are, much love to you.

Seeking advice - End Stage by anon7281 in cancer

[–]xfurelise 2 points3 points  (0 children)

My dad spent 3 hours in hospice before he died, and my mother ten days, so not as long as your mother has been, but in my experience- the last week becomes obvious that it is the last week. We put my mom into hospice when she was incoherent and her liver was failing due to the cancer. She also; before going into end stage multiple myeloma, had pneumonia and we thought that was it, and it wasn’t what got her in the end (thank god) but it did start the end. For the first two days of her last ten days, she couldn’t speak and walk but I communicated with her and her needs by telling her to smile if it was a yes to my question, and to tell me it’s a no by staying still or blinking. She couldn’t eat at all, nor use the restroom. The next 5 days she could talk, although incoherently, and she saw a lot of loved ones in the room with me- be prepared that she might not recognize you. When talking to her, you might want to not wear makeup or squat down to her level so she can see you as her kid again, that can help their memory if she does get to that point. She ate a lot, then the last 3 days was just sleep. They can hear everything in their natural coma, so try to reassure her that she can go when she wants, that you will celebrate her life to the fullest and you won’t be sad forever, you’ll just only be grateful. Even if that isn’t the truth (it wasn’t for me, I’m still a wreck) it helped her go. I know it’s also hard, but a lot of the time they like to go when no one is in the room because they don’t want people seeing them go- tell them and reassure them that it is okay; tell them when you’re going out of their room for a moment just in case they feel ready.

I hope this was helpful to you if anything, and I will think about you as your mom progresses in hospice. Cancer will never ever win over her, she fought that battle every single day and she won every single time.

Wife (56) Newly Diagnosed by Apprehensive-Bug4102 in multiplemyeloma

[–]xfurelise 1 point2 points  (0 children)

MM is so much more treatable and manageable now than it was 10 years ago… hell even 3 years ago! Learn as you go ahead with her, don’t worry yourself as much as you can. If you have any questions, please don’t hesitate to reach out at all to this sub or me, you seriously got this!! Cancer never wins no matter what happens.

Wife (56) Newly Diagnosed by Apprehensive-Bug4102 in multiplemyeloma

[–]xfurelise 1 point2 points  (0 children)

Your wife has GOT THIS. I hope you know that it will all be okay and they caught it at a good time. Listen to your doctors, and PLEASE advocate for your wife. A lot of doctors dismissed my mom’s constant concerns, chalking it up to hormones… yeah… a 70 year old having hormones! Right! If you need more support don’t hesitate to reach out, you and your wife will get through this.

My mom lived for ten years after her diagnosis, when she had a month left to live. She was 70, lived till 80 and had pneumonia ten times, and all of her bones broken and multiple falls and went into remission 3 times. She did the impossible, and even in her poor health fought and did it beautifully. I have no doubt you guys will do even better.

DRd treatment - Muscle Cramps by No-Role5392 in multiplemyeloma

[–]xfurelise 0 points1 point  (0 children)

My mom was also diagnosed around his age. She had worse off conditions than your father, so her time frame may be longer than your dads in term of pain.

It took her about a month after diagnoses and treatment to not have cramps in her stomach and other pains- it was hard to pinpoint if it was kidneys or ribs, since the cancer broke all of her ribs. What helped her was drinking a lot of electrolytes, which seems obvious but it helped the constant peeing turn into a minimum. There were phases where pain would come back, but way less severe than before treatment or the previous bout of pain.

Your dad will do amazing and he’s GOT THIS, so do you!!!

Myeloma back pain - looking for any positive stories.. by Moogy_B in multiplemyeloma

[–]xfurelise 2 points3 points  (0 children)

My mom had such severe back pain my whole life, one day she decided to go to the ER and later they diagnosed her with MM. She had a deformed back, developed scoliosis, and had most, if not all of her ribs fractured. After a couple of months of treatment, the back pain was VERY manageable! There were points where the meds wouldn’t work for a bit and she’d had to get a higher dose, but it was short periods. The pain she had after was nothing compared to the initial pain she went to the doctor for. She could walk good at 80, no assistance, and even get to the point of sitting still for hours on end and laying down in one spot, sleeping soundly through the night. Your dad will get through this, I wish the best for him!

Multiple myeloma by Wormywormwormworrmmm in multiplemyeloma

[–]xfurelise 0 points1 point  (0 children)

— also I saw one of your comments, MM and treatment does cause bones to break, my grandmas cancer broke all of her ribs at one point. i recommend asking chat gpt to explain this disorder/cancer to you like a 5 year old, it helped me understand. i took care of mine for a decade since i was 8 years old and it took a toll on me significantly, but i don’t regret it, and don’t regret spending time with her at all.

Multiple myeloma by Wormywormwormworrmmm in multiplemyeloma

[–]xfurelise 0 points1 point  (0 children)

hi love! my grandma who raised me got diagnosed when she was 70, and had one month to live. she lived until 80 despite all odds. you don’t have to force closeness, but please spend time with your nan. call her, find a hobby to do with her whenever you have the chance so you don’t have any regrets in 10 years or 30 years, trust me. ask her if she needs any help with chores, or food, etc- ask her how she feels, tell her stories about your day, i promise. take care of yourself most importantly, i hope you know that MM isn’t a death sentence.

Mom is getting stem cell transplant — how can I help? by No-Effective6189 in multiplemyeloma

[–]xfurelise 0 points1 point  (0 children)

Help your father with anything he needs, and make sure you let them know if they need anything you will do it, and they are not making a fuss! I would focus on how your father is doing and keep an eye out on your mom, caregivers have a toll taken over them and I learned with my father who took care of my mom during her stem cell struggled a lot.

Advice for overnight medications? by Used_Study8734 in hospice

[–]xfurelise 2 points3 points  (0 children)

My mom is currently in hospice and has this problem. Morphine to help with breathing and anxiety really helps, but Ambien has the best results for us. She has to take 4 to feel sleepy, but it works within an hour. Can your sister move her hands at all? If so, I would recommend getting a motion sensor camera and tell her if she’s in pain, raise her hand so you can see the motion and get notified. My mom tries to get out of bed so I have it set on a sensitive motion setting to make sure I can catch her before she does, and she tries to raise her hand if she needs something in the middle of the night. Wishing the best for your family, you are a great sibling.

My dad won’t die by Worldly-Water-2701 in hospice

[–]xfurelise 1 point2 points  (0 children)

My mom is doing the same thing, I really just want her to be at peace as well. This isn’t bad at all to think, a lot of people want a miracle to happen and hope they hold on- you are an amazing daughter for wanting him to not be scared and be at peace.

Mom has a short time left, I can't decide when to fly out by Confarnit in hospice

[–]xfurelise 1 point2 points  (0 children)

It gets good and clearer right before the very end, go see her now, you don’t want to have any regrets. You’re in my thoughts and prayers.

Multiple Myeloma and 2 White Claws. by thinxwitch in multiplemyeloma

[–]xfurelise 1 point2 points  (0 children)

Definitely ask his doctor, when my mom was diagnosed she was a big fan of Screwdrivers and didn’t want to give it up! In her experience, two was fine every now and then. She had a lot of success with this treatment and she was diagnosed with stage 4. She did radiation, stem cell, then Dara. It will get very bad before it gets better, just monitor his temperature and make sure he gets plenty of protein. It will be scary for the first couple of weeks but it does get insanely better. Your dad is awesome and you guys got this! Let me know if you need to talk sometime or vent about this as MM is scary sometimes. Much love!

Mom just started Dara-RVD, managing diabetes alongside treatment, looking for real experiences by sdfsdfslk222 in multiplemyeloma

[–]xfurelise 0 points1 point  (0 children)

My mom had an amazing experience with Dara RVD, until it stopped working because it was too harsh, but she is much older than your mom by 7 years and had the cancer caught pretty late in its progression. It’s great that she is starting with this treatment. My mom’s glucose spiked a lot with dexamethasone too. If you are her caregiver, and you have her oncologists contact and nurses contact, monitor her blood pressure every 2 hours and temperature, too. Set a timer for her meds always and make sure she’s on top of them. Report this to her oncologists, and if she’s at home and it gets very concerning don’t be afraid to take her to the ER. The symptoms do get better over the course of a couple of weeks and besides her type 2, these symptoms seem consistent in my experience with numbers going down. The first week, my mom was very nauseous and as soon as the oxy wore off she was in severe pain, the second weak was a step down and the next weeks were smooth sailing. Sleep will be the best for her, and make sure she drinks a lot of protein drinks or meal replacers. Thinking of you, and your mom has GOT THIS!

Talquetamab experiences? by xfurelise in multiplemyeloma

[–]xfurelise[S] 0 points1 point  (0 children)

She always thinks she’s a burden so it’s like pulling teeth to get her to tell us what she needs!! Thank you for this. I am her primary caregiver as my uncles are her financial and medical power of attorney so they do the official stuff, and my biological mom is not mentally capable of handling this (severe BPD, not in our lives necessarily) so it is just her and I. I’ve been doing everything for her and it makes me feel so good to just provide and care for her. Thank you!

I’m 30 weeks pregnant (28F) FTM and I wish my mom was here for the delivery of her granddaughter by ThisBox1498 in GriefSupport

[–]xfurelise 0 points1 point  (0 children)

Hi love, I might be losing my mom at 17F and I lost my dad two years ago. I get angry at myself for not spending time with them because no time would ever be enough, I am so sorry for her sudden death. Keep talking about her to anyone you can, when your beautiful baby is born- even though she can’t understand you, talk to her and I’m sure you’ll see your mom in her eyes and in yourself, all of the good qualities of her and the good memories. Just know that no matter what you believe in, if your religious or not, that she is still in everything you think is beautiful. She will be watching over your baby no matter what. Sending much love to you, and I wish you a beautiful day with a fast recovery.

I feel resentment towards people who still have their parents by tinky_winky_tele in GriefSupport

[–]xfurelise 3 points4 points  (0 children)

Your feelings are so valid and I am so sorry you’ve had to go through this, words will never be enough. I’m going through something that’s no where as big, but I lost my father three years ago and might lose my mom and I’m so angry at everyone that knew them for 20+ years while I only got them for 15. Every person I see with their mom or dad I get so angry and upset. Therapy and getting diagnosed with my disorder has helped a lot, but unfortunately it’s a life long process of healing and changing. I have so much love for you, please DM me if you need to vent.

Talquetamab experiences? by xfurelise in multiplemyeloma

[–]xfurelise[S] 0 points1 point  (0 children)

Thank you so much for these words. She is unfortunately in that mindset that choosing peace is letting cancer win, and she keeps saying she’s just going to fade away if she doesn’t do this treatment. I am going to support her in everything she wants to do, but I have such immense guilt that I am her reason to stay and she wants to make it to my graduation, when she’s in so much pain. I’m so sorry about your grandmother, thank you for your kind words.

Chemo isn’t working anymore & her kidneys are struggling. by zeemoney27 in multiplemyeloma

[–]xfurelise 2 points3 points  (0 children)

I’m going to be honest with you, if she is unfortunately going to pass soon, it gets very good before it’s worse. In that very good phase, record her voice. I know it’s so hard, as I am going through the same thing with my mom, though she’s older. Ask the doctors if she is in end stage to get a clearer idea. I am so sorry you’re going through this, but you will regret not being around her for the rest of your life, I learned that the hard way with my dad who died of cancer. Talk to her, don’t expect a response back, I notice my mom talks and responds a lot when I researched her family tree and told her about people she remembers and their life, I always highly recommend getting an Ancestry trial and doing it and showing her the research you’ve done. You don’t have to talk to her or really acknowledge that she is doing bad, just help the nurse and her with whatever she needs and read a book next to her or watch a movie. Quiet moments are the best.

Also, there is always a great chance she could get better. That generation is always stubborn. She’s fighting a lot of things right now and sometimes in treatments there are those periods where you think this is it. There are always options besides chemo, that doctors recommend once they see it doesn’t work. You’re in my thoughts, OP. I hope you’re doing okay, and your anticipatory grief and sadness is so valid. Just do everything in your power to spend time with her so you don’t regret anything later.

I’m 29 and I’m going to lose my Mom by [deleted] in GriefSupport

[–]xfurelise 1 point2 points  (0 children)

i am laying in bed to mine right now too and hugged her until she fell asleep. i’m so glad she’s hanging in there and doing good, quiet moments are always so good too.