Weekly Doxorubicin
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Lynne, sorry to hear about your progression on the current treatment. How long were you on this? Hopefully Dana Farber oncologists have something better for your next regimen. Please keep us posted. Are you a candidate for immunotherapy?
Dee, so good to hear some positive news! Hope this treatment keeps working for you and it is tolerable.
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S3K5, I have been on this treatment for just about ten months. I am still continuing it for now. Dana Farber called me today, but I was outside with my dog and did not have my phone with me. I called back, but the person who called was in a meeting. I assume she will call back tomorrow. Since I still feel good (so good QOL), As long as noting changes, I will probably not change treatments until after I am seen at DF.
Dee, Good news on the CT scan. WOOHOO! That definitely was a good Christmas gift.
I can’t believe that the year is almost over. I realize it was a terrible year, but I am happy that I made it through and look forward to 2021.
Hugs and prayers from, Lynne
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Lynne, were you able to meet the new MO at DF? Hopefully they have chalked out the next plan forward.
I got my second Doxil dose on 31st Dec. My TM have gone up drastically. The graph shows a vertical trend upwards since Oct2020. In Oct, my CA 15-3 was 292, on Dec10th it was 443 and on 31st Dec it jumped to 673 U/mL. I was hoping Doxil would help in getting the TMs under control. Never saw anything like this. Normal range for CA 15-3 is <31 U/mL.
Happy new year to all. Hope this year brings good healthto all of us.
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S3K5,
About TM's, everytime I start a new chemo my TM's shoot up for about the first 3 cycles. My MO explained that she thinks it's cancer cells being shed by the chemo working. They usually drop back down, never to normal levels anymore, but quite drastically. I wouldn't read too much into it yet.
Happy New Year to all of us... may the new year bring us good scans.
cheers, dee
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S3K5, I have an appointment at DF on Tuesday. It will be interesting to see what is suggested. I have chemo here in NH tomorrow. What an exciting start to theweek, right? I hope your rising TMs are a temporary thing and not an indication of how well doxil is working. How often do you have doxil? When will you have scans?
Hugs and prayers from, Lynne
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Dee, thanks for your response. I hope it is the chemo that is causing the TMs to go up.
Lynne, I hope your DF oncologist will come up with a good, tolerable treatment for you. Please keep us in the loop. Is Halaven a possibility? I think that will be the next one for me, if Doxil stops working.
Right now I get Doxil once in 3 weeks. It’s tolerable so far. How often do you get Doxil? I had read that some oncologists prefer low dose, once a week.
MRI scans for spine is scheduled for next week. I see my oncologist on 21st Jan (my next treatment day).
Doxil is causing a lot of skin issues like itching and burning, specially on my hands and feet, for which I’ll be seeing a dermatologist.0 -
50sgirl , how did your appointment with DF oncologist go? How are you feeling after your chemo? First week is hard, isn't it? Are you getting weekly Doxil?
Another member of this forum reached out to me about the rising TMs - it is most probably due to liver ablation procedure that I had on 19Oct2020. So I'll have to wait for the PET scan which is scheduled for 20th Jan. I may continue this treatment if the scan shows good results, even though it may be too early to tell. I have had only 2 infusions of Doxil.
Right now I am dealing with skin issues -burning, itching. I have been given lots of steroid creams, Benadryl, etc. Anyone else has this problem with Doxil?
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I had my appointment at Dana Farber on Tuesday. I was not surprised that I am not currently eligible for any clinical trials due to the fact that I have had several chemos. The MO praised my local MOs strategies and treatment plans, telling me he has done everything right. There was one glitch. She had not received my scans, but she did have all the scan reports. She will review the scans when they arrive. She has ordered a few genetic tests on my tumor sample. I am awaiting a phone call to give my consent. If I don’t get the call today, I will call the MO so she can get things going. She is in agreement with keeping me on Adriamycin for now until I show signs of more aggressive progression. After that I she would recommend another chemo, as my local MO suggested, or possibly Verzenio alone, or Piqray , if appropriate. I have heard bad things about SEs for Piqray and would not want to take it. I would need some convincing to try Verzenio. I will discuss everything in more depth when I see my MO on the 20th. I have a follow-up virtual visit with the DF MO in early February. Other than that there is nothing new here. Monday’s MO visit and treatment here in NH was uneventful.
S3k5, Halaven is on the list of next chemos for me, along with gemcitabine, Ixabepilone, or vinorelbine. I originally had Adriamycin weekly, but I now have it every two weeks because my neutrophils fell to 600 two cycles in a row. I have been lucky and have had no bad SEs.
Happy New Year
Hugs and prayers from, Lynne
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Lynne, it is good to get the genetic testing done on the tumor sample so you have this information for future strategy. It's great that Doxil is keeping things relatively stable and you can tolerate it.
I was on Piqray for four months. At the recommended dose of 300 mg daily, I had severe side effects, of which fatigue was the worst. For about 6 weeks, my MO lowered the dose but this resulted in progression. Around the same time, I had liver ablation and the biopsy results showed the tumor mutation to TNBC. So I had to move on. There is a discussion forum for people on Piqray, which you have probably read.
I was on Verzenio for only 2 months after Ibrance failed. It didn't do anything for my bone mets. The doctor at MSK (where I got a second opinion) said that she'd not prescribe Verzenio to patients who have failed one CDK inhibitor. How long were you on Ibrance?
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I was on Ibrance for 22 months, the longest of any lines of treatment. Although I had a dose reduction after only one round (neutrophils fell to 400), it worked well. My breast tumor disappeared and has not returned. My liver mets also disappeared and I didn’t have any new ones until that 22 month mark. My bone mets improved a bit. It will be interesting to see what my regular MO thinks of Verzenio. He has never mentioned the possibility.
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Just butting my nose in to post this from Husband11 on another thread - about successfully switching from ibrance to verzenio. Dec 22 is his post
https://community.breastcancer.org/forum/8/topics/...
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just popping in to give my experiences with Ibrance and piqray. I was on the Ibrance trial for 30 cycles until liver mets popped up.
Then I went onto the Piqray trial. It wasn't good for me, but I will give the caveat that I was one of the first ones on the trial in Vancouver & was not allowed to take anything to mitigate any SE's. Now anti nausea drugs, anti diarrhea, and anti histamines are allowed. I feel that had I been allowed those, I would have had more than 10 days on Piqray.
Halavan gave me severe neuropathy but I feel like if you haven't had it before, you might not get it. I already have neuropathy in my feet & was taken off Halavan before the neuropathy became permanent. So piqray & halavan didn't fail me, I just couldn't take them due to SE's.
Lynne, I'm glad that DF felt that your current MO is doing everything they would do. I always feel that a new set of eyes on my chart isn't a bad thing, they may have good ideas. My MO has indicated that she wants to retry Tamoxifen or anything that worked before for a long time. I haven't been on tamox for close to 7 years so she feels it's an option.
thanks Moth for popping in with a link to more info.
cheers to all, dee
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Moth, Thank you. You can butt in a time you want to. I like to have as much information as possible.
Dee, Thank you for your input. I feel that I have several choices now as opposed to the situation I was in a year ago. How are you feeling these days
I am looking forward to having a good discussion with my MO on the 20th.
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hi all!
Had a bone scan on Monday because of increased pain mid back on the right. We thought it was a rib fracture, but turns out to be that pesky rib met is acting up again. I had it radiated about 6 years ago, so GPO is thinking that it needs a tune up again. Maybe this is the reason for my CA 15-3 rising a bit? I hope so.
Not sure when the radiation will happen, I will have to travel down to Victoria for it, but I'm ok with that as long as the weather doesn't turn nasty.
Otherwise still on weekly infusion, almost a year now. take care all, cheers, dee
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Dee, It makes sense that the increased CA 15-3 could be due to the rib met that is rearing it’s ugly head. The radiation should take care of it. It’s hard to believe that you have been on this treatment for almost a year. It’s been more than 10 months for me. I still feel great and am ready to keep going.
Lynne
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hi all!
Lynne, I am so happy that you are feeling so well. Other than a couple of days of monitoring my nausea & hot feet the day after chemo, I am fine as well.
I have a telehealth appt with the RO on Tuesday to discuss radiation to that pesky rib met. I hope she agrees to radiate it. I am going to play up my pain a little bit as I do seem to have a high threshold and here they will only radiate for pain relief even tho it appears to kill off the met for a long time.
I had a echocardiogram yesterday & it shows the heart damage to be much less severe than the MUGA showed, my GPO is very happy with the result & so we will continue on with the weekly doxil. My TM's only went up 3 points this week, even on 75% dosage. Fingers crossed that this works for a while longer. If my TM's dropped because of radiation, I would be such a happy camper.
S3K5, are you still having issues with your skin? How is treatment for you?
take care all, cheers, dee
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Dee, I am glad that your heart looks better on the echocardiogram. Playing up the pain for the RO sounds like a good idea. Keep us posted about how things go.
My MO seems to like the idea of Verzenio for me. He has already received approval from the insurance company. I, on the other hand, questioned the need to change treatments at this time. My TMs have gone up during the past two months but not big jumps. We agreed to repeat scans this week, so that’s going to happen tomorrow. I am hoping there is no progression.
Lynne
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Good luck tomorrow Lynne, best thoughts to you. When will you get the results?
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Dee, The results are usually posted to the patient portal in about two days, so I could see them late Thursday. If they aren’t posted for some reason, I will hear the results during my appointment with my MO on Tuesday.
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The results of my scans were posted to the patient portal today. My reaction was “BLECH!”. My spleen and liver are both enlarged. The metts in my liver are larger and more numerous than on the November scan. Since they were too numerous to count at that time, I am not sure how they know that the number has increased. (Sorry, I just had to say that.) I suspect I will be changing treatment after my appointment with my MO on Tuesday. I already received a call from his office. They were going to submit an Rx for Verzenio. I asked them to wait until after my appointment. I am just not sure I want to go in that direction. I fear that my QOL would be negatively impacted. The alternative is to move to another IV chemo. We shall see what happens.
I had hoped for better news, of course. I still feel so good on this treatment that I was optimistic about scan. BIG SIGH.
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Oh Lynne, I am so sorry to hear that. I don't know much about Verzenio, but I read above that you had nixed the idea of Piqray. I hope you will give that another look. I was on it for a year and a half and didn't find it all that bad except for the month I got pancreatitis (about 6 mos in). Others have had a rougher time, but you may have the good luck to be like me.
This is a big pill to swallow. Progression always is, but especially when you have felt so good on this med after thinking your time was just about up. I'm glad you have a few days to absorb this news before making a decision on your next tx. You are always in my thoughts.
Hi Dee, I remember you from way back when I first started posting in the bone mets thread back in 2014. I always think of you as the "top down, heat on" lady. I have always meant to thank you for adding Lindalou's name to the in memoriam list. She was my friend too and we were able to meet in person several times, but I didn't know her wishes as to being listed here. Glad to "see" you and hear you are doing pretty well. Good luck with getting that rib radiated.
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hi all!
Oh Lynne, blech is right!! I can't believe you can feel so good & yet have all these progressions. It's one of a long list of things that I hate about this disease. I agree with Jobur about maybe talking to your MO about Piqray. I had a terrible time on it, but I know others who did well. Please let us know what the decision is on Tuesday. In the meantime, try to enjoy the weekend. Tough to do I know. hugs! really big hugs.
Jobur, I remember you as well. I'm still the "top down, heat on" lady. In fact we went for a glorious drive this week to a great little brew pub for lunch. Linda's husband asked me to post about Linda, as it was her wish to not just disappear from the threads. I miss her terribly and am a bit jealous that you got to meet up with her as we were trying to figure out how to meet in the middle, her in Stella, me in Clyde.
The RO and I spoke at length on Tuesday, we are going to wait until my next scans in March to decide what to radiate unless I am in more pain, then I am to call her & she will get me in immediately. I'm having some pain in my hip as well, but it's unclear whether it's the met or some arthritis.
take care all, cheers, dee
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I met with my MO yesterday, and I am officially finished with this treatment. My first delivery of Verzenio is due to arrive on Friday, so I will start my 8th line of treatment on Saturday. I am disappointed, but I am not sitting around feeling sorry for myself. I love life, and I will continue to enjoy whatever I can. My MO did say that he was amazed how well I did during the 11 months I was on Adriamycin. When I think back to how I felt almost a year agoand compare it to now, it is like night and day. I know that I was lucky that I suffered no unpleasant SEs. I wish that I could remain on it.
Jobur, Piqray is still out there for me. Thank you for letting me know about your experience with it. I do have the P1K3CA mutation. I might consider it later. I know that I am running out of options.
I will continue to check this thread to read how you are doing.
Hugs and prayers from, Lynne
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Lynne,
So happy that you are in a good frame of mind, I think it's important to try not to get discouraged. Not happy about the news but glad that you still have options. I remember how you were last year and was worried for you. I will follow your journey on Verzenio. It may be in the cards for me eventually, but I think Taxol will be first.
I will be staying on doxirubicin but at 75% dose.
take care, cheers, dee
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Hi to anyone who stills read this thread!!
I'm still on 75% doxorubicin, it's been well over a year with only one break last fall. CT scan on Thursday shows mainly stable with a chance of the slightest bit of progression.
I have a phone call with RO tomorrow about radiating that pesky rib met, hoping to have it done sooner than later. It still bothers me from time to time.
My TM's fell 3 weeks ago, 60 pts, but came up a bit on Friday. GPO is still happy with how it's going. SE's aren't too bad, so fingers crossed for a long stretch on this one. GPO says as long as it's working & heart is good, I can stay on it indefinitely. The weekly travel is a bit of a pain, but DH use our time to shop for renovation material for the house & go out for a nice lunch at a pub that has good Covid protocols.
Spring has arrived here & I'm working hard on getting a garden put in, new windows arrive in May, we start the kitchen reno in April, DH has 2 of the upper cabinets made, just waiting on me to paint them, we install new wood floors as soon as we finish the kitchen.... oh man it's going to be a busy year for us!
take care, cheers, dee
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Hi Dee!
I was thinking of you lately and wondering if your were getting lonely on this thread since Lynne moved on, so it was good to see your post this am. Sorry that rib continues to give you trouble, but it sounds like you had a pretty good scan, so yay! If I remember right you live on an island and that weekly travel must be a different kind of pain, a little lower than that rib.
Wow, you and dh have so many plans for this year! Just like real (non cancer) life, how about that. You go girl!! Hope the kitchen reno goes quickly and well. I remember when our kitchen was in work (long ago now) and it was rough. Worse than having the commode in what would later become a closet if you can imagine that, ha ha!
Keep on~
Jo
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Hi Dee, it’s great that you are stable on Doxorubicin for an year and you are tolerating it well. Hope the progression doesn’t warrant a change in treatment. Enjoy your home renovation and warmer weather!
I was on Doxil in Dec2020and on Adriamycin in Feb2021. I had a reaction to these anthracyclines with my legs swelling up due to vasculitis,severe drop in blood count,etc. At present I am on mega doses of steroids which seems to help. No more anthracycline for me even though my liver/bone Mets were kept stable.
I will be taking oral anti-androgen therapy along with consulting with the IR about local treatments for liver Mets.There aren’t many following this thread!
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Hello (to who ever is still following this!!
Jobur & S3K5? Hope you're both doing well. S3, any luck on local treatments? My MO says they are out for me, i wish I had pushed for them early on, but they don't seem to do them much here in canada.
My MO has decided that doxorubicin isn't giving much benefit to me & she is worried that I have been on it so long that it could cause irreparable damage to my heart, so I have my last dose on Thursday. She tells me that the standard is 6-8 cycles, & I'm finishing up cycle 16.
I will be going onto a trial with paclitaxel & another agent which I can't remember the name of, but this after at least a 3 week break & radiation on my rib & spine. That happens on the 9th. Covid shots on the 13th, finally. In reading the SE's of paclitaxel I guess I will lose my hair for a 4th time, that part is getting old... fingers crossed that the other SE's aren't too bad.
take care all, cheers, dee
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Dee, I am sorry that you have to say good-bye to doxorubicin, but it is good you have a clinical trial to move on to. It is amazing that you were able to stay on this treatment for so long and that it remained effective. I must say that I miss my days on the treatment. I hope you enjoy that three week break and also that your new treatment plan knocks down the cancer cells without any bad SEs. How many rounds of radiation will you have on your spine and rib?
Please keep us informed about how you are doing.I think of you often.
Hugs and prayers from, Lynne
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Oh Lynne I didn't think you were still stopping by here, I think of you often as well. I hope you're doing well.
I was going to do 5 rounds of rads but because we've been shut down again & I have to travel about 5 hours, my MO recommended that I just have the single round. The 5 seems to give a better long term pain solution but all that travel is just too much with all restaurants closed & no road side washrooms open. I worried about SE's from rads if you get my drift.
take care my friend, cheers, dee
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