De Novo Stage IV
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@kbl thinking if you tonight and wishing your appointment tomorrow goes how you would like it to go. I’ll be keeping you in my thoughts.
@snow-drop I hope your appointment this week goes longer and you get answers to your questions. Thinking of you as well!
I hope everyone is doing ok.
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Thought I'd drop some good news here. I went to my oncologist appointment today and she says I'm doing great. I just hiked in Yosemite for a week, about 7 miles a day in the mountains. I do have to have a reduction of Kisqali because of low ANC, but all my other numbers are good, including steadily falling tumor markers, which have been in normal range for a few months now. Happy to have passed my 1-year cancerversary with some wear and tear but doing well overall.
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@tougholdcrow, congratulations on the good result. It is always good to begin my day with a bit of celebration.
@kbl, I am thinking of you. I hope the appointment goes well for you.
I had my scans on Tuesday - the technicians were amazing, so gentle and professional. I even had no waiting, even though I was early, so the book I habitually carry with me didn't even get opened. I see the onc in a week and a half. While I can't see the reports I can see the scans - I wouldn't know what I was looking at in the CT series, but the bone scan looks a little bit promising - good in most bits, as in less uptake, but my pelvis seems a little darker. I will see what onc has to say.
In everybody's pockets with loads of support and some shortbread.
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@tougholdcrow That’s so fantastic. That seven miles a day sounds exhausting but exhilarating at the same time. I’m so glad you’re doing so well.
@malleemiss251 My appointment ended up being with the NP, so I wasn’t thrilled to be talking to him about stopping treatment, but it’s okay. They are going to have someone from palliative care come talk to me.
They are not supposed to hold back your report, but some don’t like to see it before they see their doctor. That’s a long wait.
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@kbl - the reason I was given for the wait is because of a shortage of radiologists. But if the scans are up then I am betting the report is done - besides the techs, while they greatly respect my onc, are terrified of her. Reports for her are pretty much done on the day. I suspect the delay is so my onc team can discuss the results. I have a check-up visit with my GP today - she is cc'd into all my results so I will ask her if she has received it.
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KBL, thinking of you. I'm sorry your appointment ended up being with the NP instead of your oncologist. are they going to reschedule a new appointment soon? hopefully the palliative team will be more helpful.
Harrow, thank you for the good wishes for the appointment, it was today.
Tougholdcrow, what a nice vacation with good effort ie taking lots of steps! Yosemite sounds incredible I love it.
I've spent the whole week waiting for this appointment, I was well-prepared at times I felt like I was JD! I discussed trials I could potentially participate in but unfortunately a hasty decision starting Elacestrant prevented me from those promising trial meds… I told him it doesn’t take a medical degree to understand that keeping active tumors on a weak medication for a longer period of time increases the risk of new unknown mutations, he agreed. he asked several times what I wanted, but it’s a bit late to acknowledge my concerns now that my options are limited. so the plan is to start xeloda with an estimate PFS of around 7 months, then enhertu next line. I cried 2 or 3 times during the appointment, I could tell he was sad too. I am not superstitious but I feel like if the one clinical trial I might qualify for accepts me, it could be a good path forward. I am off med for now, so my next treatment will either be xeloda or the trial I am negotiating with, whichever comes first I am not fighting anymore.
wishing everyone a better weekend/ week, hugs
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@malleemiss251 There are so many shortages of medical staff. I’m sorry you have to wait. Hopefully you could get the report from your GP.
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@snow-drop I do have another appointment in three weeks. I want to keep getting bloodwork, so I’ll keep going.
I’m sorry that you are switching to another drug, and I understand about Elacestrant. That happened to me as well. The trials started right after I got on it, so it was monotherapy for me.
I was on Xeloda for 18 months, and the only reason I came off was because the new oncologist I went to said being on Xeloda and Faslodex weren’t protocol, so she took me off the Xeloda and kept me on the Faslodex alone. I stayed on that another six months. I hope that gives you hope that Xeloda will work for you longer than seven months.
I’m sending you a hug.
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@snow-drop I want to cry with you, but I hope you have many months and years ahead for whatever is important to do. For me it was Yosemite, for you?
@malleemiss251 Sorry you are having to wait for results. My old oncologist couldn't even accurately interpret my scans, so best to leave it to the radiologists.
@kbl I have been following this struggle and I hope you find some moments of happiness and strength along the way. My basic attitude right now, which I learned from the young ones, is f**k cancer.
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@tougholdcrow You’ve got that saying right. After I had been diagnosed de novo for about two years, two of my brothers also got cancer, one of them breast cancer. We have two out of the five of us who haven’t been hit by it. It’s just so odd.
I got one of my tumor markers back from yesterday, and it tells me I’ve made the right decision to get off Enhertu. It has steadily been increasing since April. It was 56 and is now 158, making 40-point jumps each month, even after two Enhertu infusions. My tumor markers have always come down when a med is working. I’ve been having what I feel are ovary pains, and I had a partial hysterectomy in 2012 but kept my ovaries. It’s not bad enough to warrant pain meds at this point. The NP offered me Tramadol, but I said no.
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@kbl and @tougholdcrow thank you for your interest. The GP did a naughty thing and gave me a copy of the bone scan results - a really short report which stated stable - no new lesions (I only have sclerotic lesions) identified and the others, if they are growing are so slow moving it cannot be discerned. She did not have the CT scan or results, so all I can do is wait for onc appointment to get them. Lol - the funny thing is - I am learning patience - always have been impatient, but gradually learning patience.
On the down side - GP stresses about my weight loss and now low blood pressure, so it is off to the blood clinic for another set of blood tests. So two sets of bloods to be taken next week - the one on Friday for onc will leave no mark - cos the nurse is an absolute artist in taking blood, no pain, no muss. Unfortunately the one on Tuesday for GP will be a crap shoot. If I get the older nurse same deal - no muss, no fuss. If I get the younger one I will emerge after a painful experience with a massive bruise that I will have for 3-4 weeks. If I am really lucky, no spurting blood. Happens every time I get her.😱
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@malleemiss251 I’m so glad your bone scan was stable. Keep us posted on CT. If it were me, I would gently tell the front desk in the morning when you go to get the blood drawn that you can’t have the one who wrecks you, so please make sure it’s so-and-so. You don’t deserve to be spewing from getting blood drawn or have that happen to you. But I’m pretty forceful.
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@kbl - believe me - I would do that if I could - but they rotate shifts. I must remember not to wear white, she is a lovely person, just not very good at what she does. The funny thing is every nurse has complimented me on my "lovely veins". I only ever have problems with this one. But if I get her and vein is botched, the nurse on Friday (different clinic) will tut tut and commiserate.
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@malleemiss251 Oh, shoot. I’m sorry about that. I will be over here hoping it’s not her rotation on that day. My first infusion of Enhertu I had a nurse that tried four times and was too freaking “gentle” to get it right. She left me banged up for sure.
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I suppose that's an argument for having a port. That was implanted when I went through months of chemo, before they figured out I was stage IV, and I'm happy now to have it. I always hated the search for the good vein.
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I haven’t been on here in a while, got a new phone and forgot to login for the longest time and just got back from vacation. Catching up as best I can but I know I missed a lot.
@kbl It sounds like you’ve put a lot of thought into your decision and I have nothing but respect for the decision you made to stop treatment, especially after seeing your TMs continue to rise. I’m sorry your last appointment was with your NP instead of your oncologist. I hope things go well with palliative care and I’ll be thinking of you.
@snow-drop I’m so sorry to hear your latest scans weren’t great. I hope whether it’s Xeloda or a trial that you have great success with minimal side effects. You’ll be in my thoughts as well.
@tougholdcrow So happy to hear you’re doing well and your tumor markers are continuing to drop! Amazing to hear you were able to hike so much :)I know I missed some stuff but always thinking of everyone here ♥️
Things are still going well on my end. My Signatera is still negative as of last week so it makes me less anxious for my scans coming up mid October. I’ve had consistent negative Signatera tests since December but I still do get a tad anxious with scans being every 9 weeks. Sometimes I wish I could extend scans for my own mental health but because of the trial I can’t haha
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@tougholdcrow, unfortunately a port has not been offered - to date no radiation or chemo. I tru to take the view that it is just an adventure - lol
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KBL, thank you for your support, I truly don't know what I'd do without it. you can relate so well since you've been through similar experiences. there are several promising meds in trials and I wish we were qualified for them. I hope those meds come to market sooner than later. sometimes MOs make decisions only based on statistics or standard treatment protocols, and that's why I'm uncomfortable with those plans. I am glad that you are going to keep track of TMs, my best wishes for your next appointment with your MO.
tougholdcrow, thanks for encouragement and motivation.
jobbibo, thank you for well wishes, I hope you are doing well.
I prefer an oncologist who sees me as an individual case. it is not a one size fits all situation. but where can we find that oncologist? even when they want to provide actual care the system ties their hands. I told my MO I have a few unfinished jobs I need to complete, then I go for DWD. but until then I don't want chemo in any setting, did he listen? of course not, he went ahead and prescribed xeloda. a few things in my conversation with my MO raised concerns. he said, "your information is from support groups" how dare he underestimate my research skills? the women on this board are highly informed, sharing the latest updates and real experiences with drugs, their insights that are often not included in the official list of side effects, especially with newer meds. I’m a living example, whatever I’ve reported about nausea and vomiting was never added to my visit summaries, and TMs weren’t checked for months, even though they've been rising since the beginning, not to mention, radiology reports didn’t provide the full picture of what’s happening. yes, this is our healthcare system, do we even have oncologists who offer actual care anymore? sorry for the rant.
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@jobbibo Thank you so much. I am so appreciative to have your support and everyone else’s support in this group. You are all an amazing group that have been there for me through thick and thin. 💕
@snow-drop I feel the same way about you. The support is amazing. I am so sorry your doc isn’t listening. When I told the NP I was stopping treatment, he read me what he was going to put in the report, which was patient will talk with doctor about other alternatives. I said, nope, you can take that right back out.
Although Xeloda is a chemo, I tolerated it very well. The hand and foot syndrome was not too bad, and I just had to take a nap every day. It was way better than the infusion, and I was willing to try it because it was a pill. I totally support you, though, if you don’t want to take it, and your doctor needs to get his head out of his a**. I hope he will hear you at your next visit.
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@kbl You are in my prayers always.
@snow-drop I have been on Xeloda for almost 7 years and my only problem is avoiding foods high in folic acid. But I am used to it. I don't have nausea and for constipation, I take Miralax and stool softeners. I am on 2,500 at 7/7 and my onc seldom prescribes 3,000 for anyone. Oncs really don't like support groups, but I have been with my onc since 2002 and he knows that I do plenty of research. So he doesn't mention them anymore.
@jobbibo I'm so glad that things are going well for you.
@malleemiss251 I would definitely ask for someone else to do your bloodwork
@tougholdcrow What an awesome vacation for you! I wish that I had your energy!
Well, finally something might be done about the fact that I get ill every time my chest port is accessed. I thought that I was allergic to the Heparin flush, but now plain old saline is causing problems. When I arrive home, I get restless legs, then bad leg pains, very low BP (systolic in the 50's) and a fever. Extreme fatigue so I have to take a 3 hour nap.
It happened this past Wednesday after a simple blood draw.
So on Friday I had my Herceptin infusion and the nurses were suggesting that I might have a bacterial infection in my 22 year old chest port. I am going to call tomorrow to inquire if my onc can order bloodwork to verify that. My nurse did let some saline go through my port after my Herceptin as a way to flush my port without using the saline flushing tubes. And I was okay when I got home. I did have to nap because of the fatigue, but my BP was okay, albeit too high as usual. (systolic at 177-ugh).
One of my nurses insists that I have just been on chemo for too long and my body is tired. I refuse to believe that and will keep fighting. My recent CT scan still showed no problems.
(((hugs to all)))
Denise
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@denny123 You are pretty darned strong to have made it 22 years! As for me, I think it is just sheer cussedness.
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I talked to the head nurse this morning since I had requested a bacterial blood culture. I won't be getting one, since she said that bacterial infections don't come and go, like whatever is happening to me.
In all of her years, she has never known anyone with problems like I have. So hopefully, running saline from a hanging bag for a flush will keep working. And I will have my hand vein used for my CMP and CBC.
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KBL, thank you so much for your support and sharing your experience with xeloda. it really helps me feel more prepared. big hugs
Denny, you are an inspiration for me. I really wish I could stay on a treatment that's actually effective for a good while. I accept advice from experienced NPs, their advice are more practical than the doctors.
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@snow-drop Thanks. The nurse did suggest that I call 911 the next time that I have a bad reaction, since I have never done that. My daughter, who is a nurse, agrees with me since I doubt that the hospital would be able to figure out the problems.
My effects usually change within about 4-5 hours. I am weird.
Sorry that you have to keep changing, and I sure hope that you will soon see improvement.
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@snow-drop Please keep us posted. Hugs back. 🤗
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@snow-drop, thinking of you. Gentle hugs.
@kbl and @tougholdcrow - lol I got neither women at blood letting (I swear some drs are Dracula in disguise cos they want so much blood), but I got a young man. No waiting and I am very glad I was not wearing white cos the poor fellow got quite a shock with the blood spurt that erupted after the phrase " you will just feel a scratch" - lol. But all good, not much of a bruise, so I can't complain.
I hope all are safe and out of the way of storms etc.
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Dear Denny123, well the nurse is a bit delusional - bacterial infections that come through ports are not rare at all, in fact, I know one 10 year old boy who was ill with leukemia, and who died a month ago exactly because of the infection that got in from the port:/ Saulius
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@malleemiss251 Oh, goodness. I’m glad it wasn’t too bad, but wow!
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