A place to talk death and dying issues
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Pam and Valerie contributed so much to all of us on these pages. Condolences to family and her friends here. They wrote so many kind posts for all of us.
I will be hitting 3 years with MBC. Just today I thought of the day I found out and figured in 6 months I’d be gone.Now as I’m on my 5th treatment, Positive ...I have all my papers in order and on file with all docs. I’m buying some clothes since I lost 45 lbs in 3 months. Negative... my husband is still in denial even after a couple of “talks “Even when I spent 5 days in hospital during this Covid outbreak he just said ..you will be fine.
LoriCa I had a really rough few months with Kadcyla but this month I’ve turned a corner. By day 4 I felt ok. I started in mid January. PET in June. PM me if you want..
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And now we have lost Pam. I admired and liked her so much. She had such intelligence and a subtle sense of humor, and such a determination to choose how she wanted her life and then her death to be. I know she will always have a special place in our hearts. My condolences to her DH, family and friends.
My list of lost friends keeps growing. Sigh.
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LoriCA- sorry you are having such a hard time. its hard to manage anything besides survival when you feel really bad.
I hope that they figure out your polycythemia- and avoid the cytokine storm-
Its hard to figure out when to stop working, the transition is quite stressful. It seems like the predictions of survival are such a crapshoot- not sure what to do with the information- prepare? Sudden changes can happen, and when you feel good, you go back to life as it was. If you have another passion- and can afford to you may want to cut back or quit work- My first MO was a big proponent of doing something besides work with your time left- he retired at 60.
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Maire67 I've been on it a bit longer than you and went through that adjustment period. I was tolerating it well until recently.
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Janet,
I haven’t seen my MO since March and he’s been my MO only since February so I don’t know what they’re basing it on unless it was how I reacted to my last treatment (not well). I don’t think quickly, preferring to ponder so I didn’t ask any questions but I will see my MO on Monday and will see what he says. My primary doctor specializes in pain control so I don’t have a problem getting any pain meds if I need them and if I asked about something else she would look into it. She’s great with follow through. If nothing else, my husband takes my illness a little more seriously.
I‘m almost finished with some palliative radiation then will go back onto chemo at a reduced dosage and 🤞🏻hoping I can tolerate it and it works.
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I spent several days processing the passing of pajim which came so quickly on the heels of Gumdoctor’s passing. It is a lot to take in. I try to remind myself that their lives were not only about the decline during their last weeks or days. Their lives weren’t about just metastatic breast cancer. They lived full lives and I know as their loved ones move through the grief, they will be comforted some by many good memories of times spent together. It’s the sorrow of pajim’s life and Gumdoctor’s life being cut short from this disease that I feel. They still wanted to be productive, they wanted more time with their loved ones, they wanted health. For all of those reasons, I am so sad for their passing. Rest in peace, Pam and Valerie.
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I am worried about Maureen. She hasn't checked in lately.
I haven't provided an update either, but it is because I have experienced such an improvement , and it felt inappropriate to post my news on this thread. It's been more than two months since my MO had "the talk" with me. At that time an MRI showed " innumerable" tumors I my liver and progression into my spleen in addition to the extensive bone mets. Blood tests showed that all my liver numbers were elevated. I was in a lot of pain, had no energy, no appetite, had lost 35 pounds in a short period of time, even my voice was weak. I was given the choice of stopping treatment or trying one last thing. My MO said the Adriamycin might work to extend my life a bit, but there was no guarantee. I decided to try it knowing that I could stop it at any time if there was a negative impact on my QOL. The red devil seems to be working. My liver numbers are now at normal levels. My tumor marker came down from 3800 to 2400 in one month. I suspect that they are down more this month, but I don't yet have results . I have gained back my energy and strength, have no pain, have my appetite back, and have gained back 8 pounds. The difference is amazing. I started cycle three of the red devil yesterday. The only SE I have had is thinning hair, and I can overlook that. I will reach the lifetime maximum after 7 cycles, but if I am still doing well, I will be given medication to protect my heart beginning after cycle 5 and will be able to stay on Adriamycin longer than 7 months. I am realistic about my future. Eventually the medication will fail, and I will probably have The Talk chapter 2.
I hope I don't upset anyone by posting my good news. I feel awkward about it, but I didn't want to leave you hanging.
Hugs and prayers from, Lynne
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OH Lynne! No! I am thrilled to hear your good news. I know others will feel exactly the same. The reality is, we're all a bunch of mother hens worrying when anyone is quiet. So happy to hear things have improved so much.
Hugs. Pat
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Lynne, That is fantastic news!! At this point, it's mostly been modern medicine that has kept me alive many years, I figure they can just keep doing it.
I wish we could get immunotherapy combinations working!! I was just reading that those who were ER-positive but converted at resistance to ER-negative are WAY more sensitive to immunotherapy- chemotherapy combinations- far more sensitive than the regular ER-positive or ER-negative patients. You can bet they are looking at what the heck is going on in the converters that made Immunotherapy work so well. Its like 50% of the converters are responders, compared to 15% of ER-negative and 5-6% of ER-positive. Regardless, if it were me, I'd ask your doc if they can't just add on some immunotherapy, in case it helps...
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that's good new Lynn. Thanks for giving us an update.
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Great news Lynn. I have had recent liver progression with similar symptoms and haved switched to piqray to give it a shot. Your story is inspiring. I am glad you are feeling better.
Mary
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I haven't posted on this thread about Pajim & Gumdoctor, but am gutted by both, what seem to me to be very quick passings. Unfortunately I've been here long enough to see many succumb to this disease.
Lynne, I am so happy that the red devil is working for you. You should never worry about posting good news.
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I am totally thrilled by your news 50s Lynne- it helps all of us make future decisions. Good news is sooo uplifting!
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That’s so wonderful, Lynne. It’s so nice to hear good news.
I have been thinking about Maureen as well. I wish we could hear something.
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Cheers to you 50sgirl.
You must feel you are leaning into the Grand Canyon and someone has tethered you to a tree.
You have faced the darkness, but still your body won't give up.
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Crying over Pam... heartbroken
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Oh Lynne, so happy and grateful that you have good news xx
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Lynne,
Good news for one of us is good news for all of us! Thanks for sharing yours.
Tina
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Lynne, Wonderful news that this is working and you feel better!! I’m so glad you came back to share with the group.
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50sgirl, I am sooo happy for you! Thanks for sharing your good news!!
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Lynne,
So happy that your treatment is working. I second Curious' suggestion of trying to add immunotherapy to your mix-or if the MO doesn't agree, why not throw in the Fen Ben protocol along with the chemo? Just glad you are feeling better.
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Lynne, celebrating your dance with the devil is yielding good things. So happy for you!
Lori, it’s good to see you pop in tho I’m not happy to see the struggles you’ve been dealing with. Your one heck of a woman Lori for dealing with all that you do with such grace.
I’ve mentioned on the Ibrance thread my Foundation One came back with the KEAP1 mutation, MO said it’s rare and something they look for? I visited Dr google because I was afraid at the time to really inquire about the mutation with my MO. I’ve only been able to televisit with her the last 2 months and I’d really like to discuss this in person when I finally can. From what I’ve read hopefully correctly it indicates chemo resistance? I’m gonna gloss over the poor prognosis parts I’ve read again hopefully correctly and say I’m still here.
Pain is managed and so did my first mow of the season last weekend. I cried because I could do it. It’s my most favorite thing in the world to cut grass. I’m hoping my back allows me to get some weedwhacking done too tho in parts.
It’s an interesting question being asked. How do we know when we are close? I guess sorta don’t and sorta do want to know. I recently splurged on a lawn chair with a canopy. Think I’ll cut down some pricker bushes in waves with an ice cold water bottle at the ready. I can’t believe I’m talking about death at 38 yrs old, but May 17th marks my 1 yr anniversary of living Stage 4 and I wasn’t sure I’d ever be able to say that
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I too had to take some time to process the loss of Valerie and Pam. Pam sounded upbeat to the end. It's a small comfort that they both passed surrounded by loved ones. May God grant their families peace during these rough times.
Lori and Wandering, thinking of you and hoping today is a good day.
Lynne, we could use some good news and yours is the best by far. I'm glad to hear adria is working. I'll be joining you with her cousin, Doxil, shortly. I've had bone and liver progression and after a short course of rads will start up with Doxil.
Maureen, love, thinking of you as well.
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I have some very mixed issues about dying well. I am alone in a foreign country with no emotional support system (but good medical care")I have two daughters now 18 and 14 whom Iove dearly--but after 2 years and lots of therapists trying to help us find a balance at home, the general vibe is that I am supposed to hide my cancer, do all the cooking, cleaning and everything else, make sure things are in order for "after"--all while basically being treated like the maid.
Now that we are getting closer to end stage I have the option to move to my country house about an hour away. There I wouldn't have the guilt, pain and bitterness of having to pretend I don't have cancer, and I find it doesn't sadden me as much that they don't care when I can get some breathing space. My younger girl can live with her father(its about time he made any attemps at being a father to her) and my 18 year old can use my apartment with a little budget to help her land on her feet and figure out what to do next. I can die peacefully among the flowers and birds and I figure that anyone who really wants to see me will get up there.kids included.
Of course doing this "turtle hiding in the shell " move will have consequences, I wll be more isolated than ever and my kids will probably not come to see me at all. THey will be mad that the helicopter mom/maid/on call homework fixer/grocery provider has disappeared. so do I keep doing what i "should" or start doing what I need before its too late?
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Without a doubt do what you need. They will visit
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where you from arolsson?
My issues with my daughter calmed down quite a bit. I may be not so snappy now I am more in the groove and chemo finished for now ( hope this now is forever or for very long...). Getting on friendly terms with ex has helped as well I reckon as well as having gone over the grief of separation. May be my daughter has grown up a bit and became more aware - I don't know. It may get worse again anytime.. I think it may be one of those situations where there is no way to do it right because situation is not right - on one hand one tries to five them normal childhood , on another one hurts like hell because they dont offer support u insight ..
Hugs to you. Can you go to that other house for a while - like for a holiday ? With an option of coming back ? That could be idea - I bet children would value you more after being without you for a while and you may be able to regroup.
LoriCa, how was your beginning of the week this time?
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arolsson, what is it you want? To move to the country home?Then do it. Ask what is going to work best for you. I wouldnt spend time taking care of things after you’re gone. Take care of you now. Without guilt.
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arolsson - Are you an American expat in Sweden? No matter how long you live somewhere you still find new differences in how things work and how people think and cope. We aren't in Sweden but I have lived with a Swede for over 15 years and after bringing him along to two of my initial diagnosis appointments I leave him at home now. I think its a coping mechanism to not acknowledge that I am not ok and I won't always be there in the future, that things will just motor on like they always have. I didn't want him to tell his family because I knew their response would have been similar and more hurtful than helpful - maybe not intended that way but unhelpful nonetheless for both me and him. The expat thing adds another dimension to difficult decisions and choices about where is home and where is comfort.
At the end of the day we go out of this world alone the way we came into it. If you can't be selfish and do what you want now, when can you? I would go to the stuga and enjoy the nature - Swedish countryside in the summer is amazing and a wonderful place to find peace. Let go of worrying about if anyone will come visit (or not) and all their needs and just be.
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Thanks everyone!
I think I will go up to the house as soon as possible, even if only for an overnight. My daughter won't talk to me but keeps texting me ads for dogs that need a new home--her way of reminding me that I am a mean mom because I found a new home for the family dog a year after I was diagnosed as stage IV. The girls completely ignored "their " dog and it became impossible for me to take adequate care of her due to surgeries, chemo, well, you all know.. (The dog, a corgi, now lives with another corgi on a horse farm and seems exceedingly happy). The therapists explanation is that the girls help less, rather than more, as a way of denying the fact that I am terminal.
Anyhow the hospital has me on IV fluids for hypercalcia so I can't get up to the house now but I am thinking of bolting later this afternoon.
I live in Sweden. We are not on lockdown. You are all welcome to visit once this craziness is over!
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Lynne that is good news! Do share good news. Especially turn around good news
.Arlossen, please do what’s good for you.
Take care all x
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