Doxil, what can you tell me about this chemo treatment?
Comments
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Kimberly. She’s pure sunshine! What a face!!!
My grandson comes in Monday night. Can’t wait. He now has an American passport too! My world traveler!
Babs
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Oh Babs! He is gorgeous! What a joy. Love his little blue and grey cardigan. I'm going to head over to the liver mets thread to learn what I can about Y90. So many women seem to be having this procedure and I dont know a thing about it. Since I have liver mets I should probably learn!
Blainejennifer, has your oncologist recommended that you see a cardiac oncologist since you have been on Doxil for a year? My oncologist has brought this up since I will be reaching my maximum dosage in two or three months.
Scans on Tuesday. Will report back then.
Warm blessings to you all.
Kimberly
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kachincolor,
I get an EKG every three months, and MO keeps an eye on the bloodwork. He tells me that certain signals would show up on the bloodwork that would alert him to trouble. He also asks pointed questions about SOB and palpitations, and has a look at the old ankles every time I go in there.
Short of an echo, those are pretty good cardiac oversight. I am paranoid about cardiac issues, as I am still obese, nd both my parents had heart trouble. They were lifetime smokers, so that didn't help.
My MO has discarded the notion of maximum dosage. His plan is to keep going until I progress, or start showing too many SEs. I'm with him, as I want to suck all the juice of of this drug. I'm six years in now, so I don't have a full quiver of chemo anymore.
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Blainejennifer
Thank you so much for your update and thoughts. I like that your MO is keeping you on this as long as possible. So far, even though I am ER positive, I have never responded to hormonals, so my aresenal isn't too big right now.
Scan on Tuesday to see if aches and pains could be a sign that Doxil is managing liver mets but not bone mets -- we are all a bit confused at tumor markers are continuing to drop. The whole thing is a mystery!
Six years! That is amazing. So inspiring (and tiring I would imagine!)
Warm blessings,
Kimberly
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Looks like I'm staying on Doxil after all. I met with my MO today. She wants me to stay on Doxil at least until after the Y90 on 4/6. Since its working on the liver mets she wants to bang the dickens out of the liver before we make any changes. Sounded reasonable to me so I agreed and had my infusion tonight. Plus, she said that the radiologist felt that what is going on in my lungs is more inflammatory in nature. Hope so!
Babs
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Kimberly: The only hormonal I ever got traction from was Faslodex, 14 months. All of the others, Arimidex (landed in Stage 4 while taking it for early stage follow up), Tamoxifen (acted like jet fuel on the mets, TMs went from 800 to 2,800 in about two months), Ibrance/Femara (went from bone only to some small liver lesions) have not proved as useful.
Sadly, Faslodex is the only SERD of its type. How has Faslodex been for you?
Babs: The doxil seems to be working slightly better on the liver lesion than the bone mets, which is why I'll be radiated for five sessions next week. The liver is completely stable, while an old lesion on my hip is lighting up a tiny bit more.
I hope the Y90 knocks the stuffing out of the c-buggers, and that your lungs heal up beautifully.
Jennifer
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Blainejennifer -- I didn't get traction from any AIs. I was stage 1b grade 3 ER positive, PR negative and HER 2 negative. Because of the grade (no node involvement) I was given Cytoxan and Taxotere. Started Femara immediately after whole breast radiation. 13 months later had such a serious tumor in my thigh that the doctor who did an emergency hip replacement didn't understand how my femur didn't shatter. He said it was basically jello. Major other bone mets and liver was covered. Did Xeloda with little success; then on to Faslodex and Ibrance which worked brilliantly for three months and then my tumor markers rose exponentially. No one is sure which one (or both) didn't work for me. But there is a new SERD in development. I am going to look into it more closely and will send info.
Just kind of sitting on egg shells this weekend waiting for my PET scan on Tuesday. I have enough bone pain around my body that despite dropping markers, and great liver enzymes something just doesn't feel right.
I am also headed to Boston to meet with a consulting MO at Dana Farber.
Good luck Babs!
Warm blessings,
Kimberly
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Kimberly,
I have found that success on a chemo can lead to bone pain as the chemo attacks the lesions. Maybe that is what is happening for you?
I look forward to hearing more about that new SERD. The more, the merrier.
So sorry about the scanxiety. I just had a three-monther Monday, and was a proper b*tch about it till MO told me I was stable. While waiting in his office for my appointment, one of the nurses came out and was nice to me. This convinced me that I had terrible news coming because - otherwise - why would she be nice to me? This process can really mess with our heads.
All digits crossed for you,
Jennifer
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Hi all. I have been following this thread for a while because my MO has mentioned Doxil would be a potential treatment for me. I am now moving off Abraxane and onto either Doxil or Halaven. I am looking for feedback on side effects to try to make my decision. It is great that Doxil doesn’t cause fullhair loss but are the other side effects tolerable? Also, if anyone has taken both Doxil and Halaven or had to choose between the two, I would be interested in your experience. Thank you!
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Hello All,
Blainejennifer: I took up the position of zombie woman for 24 hours until my MO called me today to say there is regression in all met sites. Some have disappeared and there are no new mets. Whew! So I can attribute the pain to something else and am quite happy about that. Thank you for your reassuring words a few days ago. I really appreciated it. Will post more on SERD tomorrow as I am traveling to Boston to meet with consulting MO on Thursday.
JFL, I haven't had the experience with Halaven. My first rounds of chemo did not include an anthrycycline so this is my first experience with it. I lost more hair on Xeloda and had more severe hand/foot syndrome with Xeloda. Fatigue is catching up with me but I still walk 3 miles each day. Rashes have been challenging but they come and go.
Doxil has dropped my tumor markers by 88% and two PET scans show regression in both liver and bone mets. Today has been a good day for me. Thanks for the support!
Kimberly
Thanks for the support!!
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Kimberly, congrats! That flute of bubbly is exactly what is in order. You definitely need to celebrate great scan results. Doxil has done you well. Thank you for the info. I didn't realize Doxil causes hand foot.
Does Doxil require a port and how long is the infusion (or is it an injection)? I have been on Abraxane for 6 months and receive the infusion in a protruding vein on the side of my forearm. I have no port right now.
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JFL. Doxil takes 1 hour plus the debate in first so maybe 1 1/4-1 1/2 hours total. I don’t have a Port and it’s msnageable. Halaven took maybe 10-15 minutes at most
Babs
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JFL,
My experience with Doxil is similar to Babs and I don't have a port. My MO wanted me to get one, but I just wanted to be port free as long as I can. Half the women I know say getting one was the best decision they made and I have two close friends who have had nothing but trouble with theirs. Like everything on this journey--it's different for everyone.
I see you are ER positive and PR negative. Don't meet many with this combo!
Still dancing a bit enjoying my good scans. 😊
Warm blessings,
Kim
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Kimberly. You should be dancing!!! Happy for you
Babs
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Hi gang! It is official. I start Doxil on Friday. So relieved to be off Abraxane due to neuropathy and done with the cold caps. I hope Doxil is an improvement. It seems weird that I am looking forward to starting Doxil! I hope this chemo does me right for a nice, long stretch
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Kimberly: I don't know how I missed the good news! Am thrilled for you.
JFL: Doxil has been super easy, especially compared to taxanes and Xeloda. I don't blame you for wanting to be done with cold caps. I tried them once, but it was so uncomfortable that I actually preferred being bald. You might have to be on the look-out for neuropathy still, but it certainly causes it less than the taxanes - at least for me.
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Hi everyone! I had my first Doxil treatment last thursday. They did it over a 2 hour time period. Only side effect I'm having from it is diarrhea. First time I have had that. I have been fighting breast cancer for 4 years this coming May. I am ER+ PR- HER/2-... I have been on 12 other chemo drugs during the last 4 years. None of them worked. I am getting Doxil every 4 weeks. So next infusion is April 12th. They will do the infusion in one hour time frame then... I want it at the slower rate, but don't know if they will listen to me. I don't want side effects. I currently have 7 tumors: 2 left collarbone area, 2 right collarbone area, 2 breastbone and 1 in the liver. They are all small in size so hoping Doxil will shrink them.
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Goose,
All digits crossed for you. BTW, if you want a slow infusion rate, you should have it. Just ask. If the nurse declines, bump the request up to your doctor. I'm a bit of a delicate flower, and always do better when my infusion rates are slower than standard of care. I've never had any nurse decline my request, ever.
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Blainejennifer, thanks for posting about your experience with Doxil. I found Xeloda very tolerable - in fact my "favorite" treatment to date. If this is more tolerable than that or even similar, I will be in good shape.
Goose, I agree, the nurses should have no pause slowing down your infusion. And I agree, with Blainejennifer, take it up the chain - the the head nurse supervisor of the infusion room, MO's nurse or the MO. Good luck with Doxil!
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Hi all! I had my first Doxil infusion today and it went fine. It was given over 1.5 hours, with Zofran and Decadron (dexamethasone) beforehand. Benadryl was ordered also but I convinced them to forego it. I drive myself to chemo as I come from work so that would have been an annoyance to have to leave my car at the center. Luckily, my DH was there and could have driven me home. I haven't had Decadron in years and forgot about the instant sensation, tingly "jolt" I feel in my heart and other body areas right when the infusion starts.
I a curious what your doctors told you about cardiotoxicity/cardio risks with Doxil. What have been your experiences? I had understood that it doesn't have the same cardiotoxicity as the red devil but my MO described it more as it has a much lower impact on the heart but over time, does ultimately have the same effect and goes toward the lifetime limit of doxorubicin.
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JFL,
I have spoken to my MO about the cardiotoxic nature of Doxil. He has told me that we will just watch and wait, as each individual will have a different tolerance level for the Doxil. So, I get EKGs every three months, and he keeps a beady eye on my blood work.
It appears that the "lifetime" dose is an older approach to Doxil, and that careful oversight is the newer method of handling the cardiac issues. I do know that I pester him like heck about the heart issues, as both my parents had heart trouble.
It also helps that, except for cancer, I am in reasonable health and mobility. I hope you have a grand time with Doxil.
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Thanks, BlaineJennifer. My MO mentioned doing an EKG in 4 months and then every 4 months after or so. I recall doing a MUGA scan on Adriamycin. Not sure what the difference is between those two. When I was early stage 11+ years ago, there was another young woman diagnosed at the same time who survived cancer, only to die several years later of heart failure from Adriamycin. A year or so after she took the drug, her heart started giving her problems and downhill it went from there She was in her 30s. That always remains in my mind. Just awful. Sadly, it is not just a theoretical risk.
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BlaineJenner- Can you confirm you are now six years from metastasis diagnosis? But so far, no CDK4,6 inhibitor like Ibrance or Abemaciclib? And how long have you been on Doxil? thanks!
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Cure-ious,
Yup, six years since diagnosis of MBC. Have been on Doxil for 11 months. I did try Femara/Ibrance about two years ago, but it did not work, and I went from bone only to some liver lesions while on that protocol.
Jennifer
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Update on my side effects to doxil... This week, I have had nausea and it has been 3 weeks this coming Thursday, since infusion. The decadron made me constipated for about 5 days then i swung to the diarrhea side of things and had to back off of the laxatives. This week also i have started to lose my appetite and I'm very fatigued. Will keep you informed.
I would have along list of drugs after my signature but I don't know how to do that anymore. It was a while ago that I joined here. So, if someone would tell me how do it, I can reconstruct my 4years in may, time line.
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JFL - welcome to the Doxil world! I have to tell you I have been following you for a while because we have a ton in common in terms of dx! I was diagnosed at 37 while being 32 weeks pregnant! Like you, I tried a few things before starting Doxil including the Abraxane and the irritating weekly cold caps.
To answer your question, I agree with you that arising heart issues is not something we should take lightly and my MO did talk to me about the risks but from my understanding Doxil is a milder form of AC that doesn’t cause heart toxicity as much. Yet, Echoes on the heart every 3 months should do the trick and hopefully we all get the benefit of this medicine with no side effects!
Jennifer- 11 months on Doxil you are surely an inspiration!! I wish I can last that long! My issue with Doxil now is the hand foot syndrome (HFS) .. my feet suddenly started hurting like crazy and the balls and heels turned white !! I can hardly walk normally.. even though I moisturize with urea cream like crazy and I’m only six weeks in Doxil! At the end of the first cycle I experienced some peeling also on the balls and heels but I thought maybe that’s just residual effects from being on Xeloda for 2 and half months prior.
Doxil ladies, any advice is welcomed and greatly appreciated .. it’s awesome that I only go for infusion once a month gives me a long time to forget and live normally but if I can’t walk not sure that’s going to work especially given the baby .. I’m like hold on baby don’t do anything dangerous until I slowly crawl your way
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Nouzay,
The hand foot stuff can be limiting. I haven't had too much trouble with it on Doxil (unlike Xeloda, where I had to take breaks because my hands and feet peeled and ached).
Have you tried icing your hands and feet during treatment? I know this might work better for the taxanes, as they go to work immediately. Doxil, as I understand it, takes a while to shed its carrier and get to work, so icing during infusion might not be as effective.
I do find my feet don't get hot and burnt feeling if I go barefoot as much as I can. We keep the house cool, so this might have the effect of cooling my feet on a continual basis, reducing Doxil uptake in them.
You are awesome for doing this with a baby! There are days when I can't even take care of the dog and cat. Well, let me rephrase that. There are days when I don't feel like taking care of the pets, but I do it anyway because that's just what you do. You need to have medals pinned on you.
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Nouzay, we definitely have a lot in common with our BC "journeys", with ages, pregnancy diagnosis, treatments! How old is your baby now? Definitely does make things challenging.
Does everyone get hand foot on Doxil? Would you recommend starting urea cream now (like on Xeloda)?
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JFL- the baby will be 18 months on Friday! Yay! I love that I was granted 18 months to be with him and see him grow.. something I never even imagined would happen when I first laid eyes on him, a teeny premie that had to be taken out 6 weeks early due to my extensive mets and a broken femur!! It has been quite the journey!
Thank you Jennifer for your kind words!! You're so sweet:) True the baby does complicate things but you all make it look so easy to be an MBC patient .. I'm always in owe of you and the amount of research you all do to be on top of it!! Truly inspirational .. I wish I had your strength! Thanks for the tips with keeping the feet cool .. I'll try icing them during treatments,though I did notice the delayed side effects recurrence.. I had this horrible rash all over me only 7 days before my 2 nd dose, one would think if there's a reaction it would happen in the first few days?!?
My MO prescribed dexamethasone twice a day for a week for the hand foot stuff and said she'll probably decrease the Doxil dose next time .. I'm not sure how I feel about that! I don't want to compromise its effect so soon but then again I'm not even sure it's working.. tumor marker is still high?!? And steroids for a week!! I take one of those pills before the Doxil and I stay up for three days I'm not sure what I'll do with myself after having to take 14 of these pills !!
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I am joining the Doxil gang next Wednesday. I am getting an echiocardigram Tuesday then Wed. I start. MY onc said my hair will grow back. Is it good for liver mets? What side effects? Nausea? Why does it require premeds?
Thank you,
Lisa
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