How are people with liver mets doing?
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I just looked at my MRI report. Not good. But my three months off has been good.
It showed overall increasing size of liver mets plus new ones inboth lobes. Also, it mentioned iron deposits in liver and spleen. I've never had that on any report. Does anyone know what it means? I'm wondering if it could just be from my recent iron infusions?
Same thing in my lung. Increasing and more. It mentioned pleural effusion. Also, in one area they used the word atelectisis. But, I don't feel SOB or anything.
I'm just thankful it didn't show ascites in my liver I'll just have to hope the clinical trial will help I don't regret My three month chemo break I made lots of fun memories. Plus, even when I did the last two chemos my MRI reports were worse.
I'll post some pics
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My grandson, red shorts, making a TD catch
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With my Grandkids on our vacation to Beavers’ Bend in Oklahoma
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With my daughter and son 0 -
Great pictures. You have a beautiful family Grannax.
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NinaCA,
I'm being treated by Hope Rugo at UCSF. I am a dancer and noticed a kind of blind spot in one corner of my eye. Went to see an Ophthalmologist who found my eye tumor. I don't think just any eye doctor would have figured this out. He also immediately called my Oncologist to fast-track scans to the rest of my body. Eye cancer is extremely rare but eye tumors are generally indicators of advanced metastasis. I see an Ocular Oncologist at UCSF, Armin Afshar. He is terrific. I also had my eye radiated at the same time as my whole brain radiation. This was done by Penny Sneed, also at UCSF.
I don't know if smart ports are simply the norm these days. I also don't know what's "smart" about them. I do know that the nurses seem to be relieved when I tell them I have a smart port.
I also wanted to tell you about our metastatic BC support group for women 45 or younger at first diagnosis, any BC diagnosis, not just Metastatic. I assume, since you were first diagnosed in 1998 you would qualify for that age cutoff. We have members from all over the Bay Area and even some who have moved to other states. Theresa45 is also in the group. We are a subgroup of Bay Area Young Survivors (BAYS). PM me if you are interested in finding out more.
Hugs, Susan
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I apologize for intruding on this thread. Susan, did you mean a power port rather than smart port? If so, Kaiser only uses power ports, at least at their Santa Clara campus.
*I was curious so… Smart Port is a brand of port made bu Angiodynamics. It functions in the same way any power injectable port does. It appears that they have simply chosen to name it smart port, rather than power port. I have a Bard power port, petite size!
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Dear Saulius, waiting for results is nerve-wracking and my heart goes out to you and Sandra. I am hoping and praying and visualizing the very best results!
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Nice pics Grannax glad you are feeling so good. I am confused..I thought you lost all your hair on Halaven??? It looks like you have long hair up in a bun there?? do you??
Saulius...hoping its all good!!!!
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Thanks Susan re: info on the port. Update from my end - will start Navelbine on October 8th (Canadian Thanksgiving weekend... sigh...). While the MO seemed to indicate we would try chemo without a port, it turns out he put in a requisition. They don't know if I will get it before my first infusion, it may be in between infusion one and two. I suspect they will want me to have it as soon as possible before my white/neutrophil count tanks. Fingers crossed they find a spot for me early next week.
Nina, I think power ports are pretty standard now. The nice thing is, once the incisions heal, there is no external opening to add to the risk of infection. I had a PICC line with my initial stage II diagnosis and infection was always a significant concern. It was also much more limiting in terms of day to day living as I couldn't bathe, only shower and there was always a chance that it would get snagged if I wasn't careful.
Saulius, sorry about the added anxiety but sending positive thoughts for benign results.
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Salius
hoping it’s nothing and your wife has continued health.Looks like I’ll be starting ibrance next week. Hoping my body with all its complications can handle it
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Sorry Grannax. I didn't mean to miss you but somehow didn't see a bunch of posts before I responded. So sorry to hear about the progression. I do hear you on not being sorry about the break though. I'm coming off four months and yes, progression but I hope my body will be better able to deal with the chemo as a result.
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granna, sorry to hear about the progression. when do you start the clinical trial?
sadie, I hope you can get your port surgery quickly. I hear surgical delays are more common on the island right now than on the mainland. perhaps if necessary you can come here to have it done - it is just a day surgery
saulius, ugh, hate the waiting! we're all waiting & hoping with you
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Sadie: I am grateful to have a port when I am at the infusion centre watching arm warming, vein thumping, folks sitting there with one arm mostly immobilized. I wish it didn't stick out so much but the alternative of wrecking my veins is worse.
Saulius: I'll keep watching for an update. Hope it all goes well.
Grannax: great photos. Wonderful one of your grandson, airborne, catching the ball.
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Grannax,
You look radiant and strong! Thanks for sharing those pics!
Hugs, Susan
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My wife just got back the results of latest scans (MRI and CAT) and blood tests. Her tumor markers fell a little further, but the scan shows an increased thickening of her peritoneum. The Onc says the only explanation would be cancer in the peritoneum, but I am wondering why it would thicken while tumor markers drop and they suspect it is advancing cancer. I asked if there were alternate explanations for the thickening of the peritoneum and the Onc said only cancer. Anyone have any thoughts on this? I am wondering if it is related to the ascites she had that was serious at one time, and is now off and on recurring to a much smaller degree.
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Husband...I am happy TM's are falling but not happy at what the MO said...hrmmm..nothing worse than the MO leaving us with more questions that even they don't have the answer too. I would suggest asking on FB...I know when I ask things here I get like most 7 -10 replies..on FB like 50....
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Thanks Nicole. What FB group?
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Closed Metastatic (Stage IV) Breast Cancer Support Group
It says CLOSED but its not its open to all Stage 4...just click join and answer the questions
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Grannax, those pictures are priceless. You spent your 3 months off in the best possible way!
I hate to hear about the progression and hope that the clinical trial quells any more progression.
We have to keep on keeping on.
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Grannax- you look so happy. Thanks for posting those photos. It stinks about the progression, but you have a plan and we are all hoping with you that it works.
Nicole- how are you? Did the thrush resolve? Did you get to take your trip? Missed you
Husband- so frustrating to have something show up when numbers are good. Keep digging for answers. Did the MO give a plan forward?
Sadiesservant- ports make things so much easier. Be sure and ask for a one stick visit. I have gone to a big center lab that cannot access the port or leave in the needle, especially a problem between scans and bloodwork. So they poke my one arm then infusion accesses the port. Ugh! My local clinic is great at keeping my one stick policy.
Dee
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Thanks everyone. So fun to share pics, I’m a proud Granna and mom.
Nicole, I only lost about half my hair on Halaven and continued to wear it in a ponytail/ bun. Now it’s getting thicker.
Moth, the CT will begin in late October. I don’t know exactly when my first appointment will be. I already know I qualify, the results of my scans will not disqualify me. I think the first appointment will be specifi labs. I know I will need to have a new liver BX.
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dear husband, its great that your wife's tms are dropping, excellent news. there are different kinds of thickening and each kind has subcategories. the thickening could be down to benign reasons (like inflammation) or ascites as you have mentioned.
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B-A-P, WOOHOO for the news that you will be starting Ibrance next week. Your strength and determination are amazing. Enjoy your time at home with your family,
Grannax, I am sorry that you have experienced progression, but I know you have made each day of your break from treatment count. I hope things move along quickly for the clinical trial. The pictures are beautiful. My goodness your grandchildren have grown. Where does the time go? It looks like your granddaughter has your beautiful smile.
Hugs and prayers from, Lynne
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Candy-678, Thanks for asking your optometrist about the eye mets. I have had an ophthalmologist look at my eyes recently but they said they didn't "see" anything. I don't know if that is how it is discovered or it shows up on a scan. I don't think I had dilation this last time. Good to know there were no symptoms. I have irritation under my eyelids but maybe that is just allergies. I'll worry if the irritation goes away now! I was also thinking it was a side effect from Xeloda. Nina
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Dear Grannax, thank you, it is so sweet when you post these beautiful pictures. These three months off were for sure worth it. Recuperating is important before jumping on the treatment train again...
Dear BAP, I am so happy you'll start treatment. Ibrance is powerful, it has changed lives of so many people. Do you know Stephanie Seban - try to search, she has an active blog, and an amazing story how she was misdiagnosed and given anti her2+ drugs, although did not have her2+, and basically was for years on wrong treatment with metastatic disease, and how Ibrance turned suddenly everything around. Crazy and very encouraging.
Husband11, do you think she could be checked with ultrasound? Quick, cheap... and you could be together, so you could ask questions. Skillful and experienced radiologist could tell you a lot about that thickening.
Dear all... thank you for your support and kind words. We feel better today, and will try to put anxiety aside for next week...
Saulius
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AWWW thanks Dee!!!!
So Halaven is not treating me as well this time... I have been running fevers after each infusion ( I had 3 infusions so far)
1st Infusion was Sept 7th...I had low grade fevers for 2 days... (I didn't think anything of it bc when I did Halaven back in Oct 2020 I got 1 fever after 1st infusion but never got another one)... They went away after a couple of days...but then I got 2nd infusion
Sept 14th 2nd infusion...Tuesday...Thursday night started feeling crappy...Friday, Sat and Sun worse achy and low grade fevers....Sun we drove to TN...I was out of it the entire ride literally like nodding off...it was very strange.... Monday morning in TN went to Hospital...fevers stopped with tylenol covid negative...and then by Wed started feeling better....but now...just had 2nd round...Tuesday Sept 28th.... yesterday... Wed...fevers started...all low grade between 99. - 100.8...... I am going to wait to see if I have fevers more than 4 days because my MO said fevers with each infusion up to 4 days can be normal....(also read many people in the FB Halaven group said their MO said same thing)....
I put in a call to my RO today..bc if I move a certain way or lay down a certain way my pain from fracture is soooo bad...I did hear that when you have die off after Rads it can cause increase of pain...I am 5 weeks out from last rad.....waiting for RO to call back...
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Husband11-
Forgive my intrusion on this thread, as I don’t have liver mets. I’ve been following your posts regarding Enobosarm, and wonder if it could possibly be causing the peritoneal thickening. Just a thought? I wonder if it has been reported as a side effect in any of the clinical trials…
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Myshadow,
That is an important thought to explore. I "think" it preceded the use of enobosarm. My wife has all her records of mri results. I will ask her to dig them out and we will see when the first indication of it came up on the mri. Enobosarm / ostarine has been around for quite a while, but only in the last few years seen as a possible treatment for AR + breast cancer. It has been used in higher doses for trials on osteoporosis and muscle wasting due to cancer. They didn't report that as a side effect. Most noted side effect was elevation of some liver values. My wife's liver values have slightly elevated since she started enobosarm / ostarine, but nothing to a level that worries the oncologist.
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I am considering stopping treatment....The Eribulin/Halaven is not treating me like it did the 1st time around..I have fevers for over 3 days and feel HORRIBLE...my MO said there is no way I can go back in Tueaday for chemo if I am still feeling like this over the weekend...that leaves Trodlevy, Abraxane...Gem.....and I think thats it..and all those are known to cause way more side effects than Halaven...and I just don't know if I want to go through that....
. Just wanted to share with you all.0
