All About Doxil
Comments
-
Thanks Cindy!
wonder of wonders, so far (2 weeks in ) Doxil is the gentlest treatment I've had. We are doing every 3 weeks which I think is mostly to more easily coordinate with Herceptin. A little nail discoloration and some fatigue but otherwise OK. Still doing the cold cap and no hair loss. Now if we can just get this corona thing under control we can all relax!
0 -
arolsson: I'm glad to hear you are having an easy time with Doxil. So far, I have had an easier time with it than with some of my other treatments. Affinitor I absolutely hated! Ibrance was very tolerable and so was Xeloda, but each had reached their end of effectiveness. So far this month, I have not had even the beginning of mouth sores. My fatigue is manageable. I hope it continues to be helpful to you!
Cindy
0 -
had anyone with breast cancer that has lobular features or lobular bc had success on doxil???
0 -
Just checking in to see how everyone is doing! Certainly not what I envisioned myself doing in the month of April but, oh well, it is what it is. I'm still doing well on Doxil, 11 months now! My last blood work was great with tumor markers down again to 28! I'll take that all day long.
Hope you're all finding things to occupy your time while this is going on.
Take care,
Cindy
0 -
Hi Cindy and all
I'm still doing well, my hemoglobin is down a bit so more tired but my WBC are good. Next scan in mid May. Sweden doesn't do tumor markers so no way of knowing if the Doxil is working but so far so good.
Tomorrow Ia my Doxil polus herceptin. They are doing symptom checks to make sure we don't have corona, though I don't think I will be tested. I am a little worried because my daughter was sniffly with a slightly elevated temp and body aches this weekend. She seems to be getting better fast but I certainly don't want to put anyone else at risk by being a symptom-free carrier. WIll see what they say./AMY
0 -
Amy, glad to hear you are doing well on Doxil. The only place I have gone in the last 20 days is to the imaging office for my scans. Tomorrow i have a paracentesis there and a brain MRI on Friday and I'm done with going out for awhile. Let's hope we can all get back to our regular routines in May!
Take care, Cindy
0 -
Well its now official...I failed Xeloda...and I will be starting Doxil. If anyone has tips and can tell me about side effects I would appreciate it.
Oh...I will be doing it once a month...
Nicole
0 -
Welcome, officially, to the Doxil thread! As I'm sure you're well aware, SEs can be different person to person. As for myself, I have continued with the H&F from Xeloda, along with mouth sores, however, since my MO reduced my Doxil dosage, I have gotten rid of the mouth sores (Thank God!). I have low hemoglobin which causes me to be more tired than I should be but when it drops below 10.0, I get an Aranesp injection to help bump it up. At this point, all my other blood work looks normal and my tumor markers, which are a good indicator for me, are down to 28 (normal is <38). All in all, a very tolerable treatment for me.
I'll let the others here relate their SEs. I hope you do well on it!
Cindy
0 -
Thanks Wallaby how long have you been on it? Unfortunately I cannot ever go by tumor markers mine have never changed ever. But...I do have an itchy skin condition that I had prior to my stage 4 diagnosis I should say I actually had stage 4 but didn't officially know it yet...and when my first treatment of Ibrance Letrozole and Faslodex it went away.... for the 3 months that those meds had worked. Month 4 when it failed it started coming back...now again as Xeloda failed again it came back....So I guess that is like tumor markers for me.lol
0 -
Has anyone fasted before chemo for like 24 hours?
0 -
Ok,..not too much happening in this thread
Does anyone get pre-meds before infusion if so....WHAT and Why?0 -
I get a dexamethasone and 2 metoclopramide as premeds. I believe they are to help with inflammation from the chemo & nausea of course. I was continuing to take the meto when I got home but discovered that wearing seabands for 24 hours was enough. I am on a different doxil than you, I am on weekly doxirubicin. If you think this thread is slow... I think I'm the only one still taking the weekly one.
0 -
Thanks GG... yea maybe that is why ...I guess I am just use to when I use to be on Ibrance that thread MOVES...lol
0 -
Can anyone help....... After months of being constipation free....Doxil is now constipating me I was bleeding pretty bad this morning trying to go. The only thing that actually made me go is because I used a glycerine suppositories... Yes I am taking miralax and magnesium... I just want to know if anyone has tried Castor Oil for constipation? It's probably the ONLY things I have not ever tried.... I just can't seem to find anything on line if it interferes with Doxil... (I will cross post).
Thanks friends....
0 -
Nicole: Have your MO give you a prescription for Lactulose. It's a liquid you can mix in fruit juice (or water, but I don't know why you would want to!). It's very gentle, takes awhile to work, and won't make you feel like you've all of a sudden gotten diarrhea! I am hypothyroid and although I've been on medication since my mid-20's, I always tended to have "the slowest metabolism on earth!". I was very constipated when I went on Ibrance and I ended up in the hospital because of it. After that I got the Lactulose and it saved me from that issue. I still use it from time to time.
And, no, I have not tried castor oil.
Cindy
0 -
Thanks Wall...I will ask. I already sent her a message telling her I will not take the Zofran at next infusion...someone told me to ask for Reglan instead, that they didn't have the consitpation issue with that....
0 -
How frightened should I be?
yesterday's treatment was cancelled-or rather delayed a week--due to low leukocytes and netropenia. They took a blood test last thursday and said it was too low, so we would take it again monday morning 6AM. The results show WBC significantly lower still. trying to get a sense for how to nagivate this logially and emotionally.
B-leukocytes are 2,1, reference interval is 3.5-8.8 and apparantly 2.6 is a minimum for treatment
B-netrofilia granulocyter is 0,9, reference interval 1,6-5,9
new test Thursday to see if I can take Doxil+herceptin+biosphenol (for bones) on Monday morning
Meanwhile I am staying in as much as possible but still have no help with daily chores, buying groceries etc. Advice for worsening hand foot syndrome is to use my hands as little as possible, don't wash too often so they don't dry out etc. Ha, Ha. What world are these folks living in?
There seems to be some treatment for bumping up your WBC so that the continual assault of Doxil on my bone marrow can be ameliorated. What should I ask for?
And--sorry to be negative but I don't have high hopes for Doxil. Its just that its my last chance./AMY
0 -
Amy, I'm afraid I'm not much help here as I have ER+/HER2- cancer and they do behave somewhat differently. I also have not had issues with my WBC, only my Hemoglobin but I believe they give Neulasta for low WBC. I wouldn't be in a panic for missing a treatment as I have been told that the Doxil is still in your system for quite awhile afterwards. I get mine once a month and even a week before my next treatment, I am sometimes still peeing orange!
As for the hand and foot, I can attest to the issues with that! I use rubber gloves for dishwashing but I always did wash my hands a lot, even before Covid 19 came along. All I can say is that you have to keep slathering on the cream/lotion on both your hands and feet. When mine get bad, I use Nitrile gloves with something like Bag Balm at night. In the morning they are much better but you still have to keep cream/lotion on them during the day. It's really a pain and I live in Las Vegas where the humidity in the summer hovers around 10%, drying you out even more. It's a constant battle.
This is a temporary setback with a solution. Please hang in there and don't give up yet. The best advice my MO gave me is: "Stay off the internet!!". I also don't go over the finite details of each test result, I look at the bottom line. I know some of the people on threads on here go over each minute part of every test result and follow the trail of every "what if" out there. If I did that, I would drive myself crazy, make a lot of erroneous assumptions, and it wouldn't change a thing about my treatment. I'm not an oncologist, that's why I have one! Yes, it's good to be informed and be able to ask relevant questions when we see our MOs but to lay awake at night worrying about some percentage point isn't for me. But that's just me!
Cindy
0 -
Arolsson....Don't be panicked...I had a time where I had to go off Ibrance for a month due to mouth sores...I really didn't have any significant growth at all during that time.
Question.... They didn't give you the shot of Neulasta to help your white blood count after your infusion?? I got it... I did ask for a reduced dose of it...so they agreed I got the 3mg instead of the 6mg. What was your WBC prior to this??
0 -
Hi Nicole-
Now we have started Neulasta injections, the lower dose. Neutrophils (sp?) at 0,8 and leukocytes at 0,9. that was before the injections. Kind of right on the edge of "severe neutropenia" Just did the first injection in my belly yesterday afternoon and had a horrible night- fever, muscle cramps, headache, some sudden mouth sores and generally feeling like I've been run over by a truck. Considered going into the ER but just couldn't bring myself to do it. Better this morning after taking gabapentin, clarityn and an oxyscand. Now I just have the muscle cramps and spasms and a bad headache, but can't take tylenol because my GT is high. Going in Monday to do another blood test and hopefully get my Doxil.
Happy Mayday! keep me posted. xoxo to ALL!
0 -
L- Theanine is something to look into ladies!!!! This from Memorial Sloan Kettering plus a bunch more of literature....
L-theanine was shown to increase the antitumor activity of chemotherapeutic drugs doxorubicin and idarubicin (5) (6). These agents normally bind the glutamate receptor and the complex is transported across the cell resulting in reduced concentrations, hence attenuating effects of these drugs. Consequent mechanistic studies revealed that L-theanine, a glutamate analogue, competes with glutamate to bind the glutamate receptor, resulting in suppression of chemotherapy efflux (extracellular transport), increasing their concentration (27).
Interestingly, L-theanine also reduces the adverse effects of doxorubicin. The proposed mechanism is based on the variance of glutamate receptors expressed in normal and tumor cells. Whereas theanine binds the glutamate receptor in tumor cells, it is metabolized to glutamate in normal cells. This increase in glutamate likely results in increased efflux of doxorubicin from the cells, thereby decreasing toxicity (28).
Animal models indicate the prevention of doxorubicin-induced acute hepatotoxicity occurs through suppression of intrinsic caspase-3-dependent apoptotic signaling (24). L-theanine does not induce or inhibit cytochrome P450 enzymes (9).
Some novel theanine derivatives were found to inhibit lung tumor growth by targeting EGFR/VEGFR-Akt/NF-kappaB pathways (23).
So my MO just email me (on her day off) after reading the studies I sent about the L-Theanine...here is what she said...:
"In regards to L-theanine, from what I can tell it has been studied in animals and in the lab but yet in a large clinical trial. I would personally prefer you avoid it for now. Also - the liposomal doxorubicin is a bit different than regular doxorubicin so I am not sure if that matters. These things can cause toxicity that we don't know about until they have been studied. But ultimately up to you.
I am looking forward to seeing you and your labs next week."I guess the liposomal Doxil..could be different...so I am going to hold off for now...
0 -
I just had my first Doxil treatment today. I have been reading these helpful posts. I have my hand and foot creams at the ready. I just can’t sleep at the moment (3am). I was thinking while receiving Doxil how angry the red color looked. I hope it is very effective for all of us
0 -
Anne... I go for my 2nd infusion today. We broke down my treatment to twice a month. Mine was bearly red...looked more pink...but I know what you mean I hope it kills this CANCER!!! I try to envision it sucking the life out of the tumors....lol
0 -
Thank you NicoleRod. Good luck today with your treatment. I was so uneasy not having anyone with me. The nurse of course stayed with me for the first 15 minuets. She said if I were to have a reaction it would happen in the first 15 minuets..I said “what could happen”. she explained it would irritate my kidneys and I would have low back pain. After the 15 minuets I was ok and Ididn’t notice feeling any different. I did notice it’s used with dextrose not saline. I asked the nurse why. She said it’s not compatible with saline it has to be dextrose. She said I don’t get the whole bag..... not even a quarter of it. I felt like if I was going to get sugar I would rather it be a brownie or cheese cake than a bag going into my vein....🤣
0 -
Anne..LOL right?! By the time I got the infusion I was 41 hours fasting...so I drank my banana date smoothie and enjoyed it hoping that the cancer (possibly very hungry) was gobbling up that sugary smoothie along with the RED DEVIL DOXIL!!! lol... I didn't know that bag was sugar...my nurse called it something else...or at least I thought she did??
My bilirubin which is always strange...was 1.1 last week the LOWEST EVER IN MY LIFE...and today..fasting and all.... 2.9...go figure...my MO was saying my bilirubin is sooo odd!!
The only other pre-med I got today was a small 8mg dose of the steroid. I refused the Zofran due to major constipation issues..and I did great no nausea at all and she even upped my doxil dose... we are upping it slowly bc of the bilirubin. She said if I do good this week..no pre meds at all in 2 weeks! After the next infusion in 2 weeks then we will go to once a month...and scan at month 3 I believe that will be July.
0 -
Well I don't know how soon Doxil can work??? I do know its not working yet for me....my sacrum is still hurting...and until it stops (like it did when Ibrance worked for me for the 4 months)....well I know then, that it isn't yet.
0 -
hi all, just an update, the neulasta helped but we can't get my calcium levels down. Am chugging water and they have me on IV fluids. I have a little trouble swallowing but not too bad. mostly a terrible headache, feels like a tension headache.
Next scan 28 may, that means results maybe mid june. Who knows what will be next?
0 -
aloha, I have been diagnosed with stage 4 breast cancer with Mets to the ribs and pelvis In March 2020. The 12cm mass in my pelvis is why I am getting Doxil. Hopefully the Doxil will shrink the tumor which will subside the ascites and pedal edema. I received my first Doxil tx on May 13, 2020. Got zofran IV before and haven’t had n/v yet. The next day I had my 3rd paracentesis done(4000ml). Then on 5/15/20 I am getting my first unit of PRBC transfusion. I just want to thank all who have shared their stories. They are all very insightful,
0 -
Hello ladies! I'm not new to the boards, but have started Doxil. I haven't read all your posts yet, but most of them trying to learn about this drug. I have had 2 doses 6 weeks apart (radiation delayed the 2nd dose). I'll be receiving my infusions every 4 weeks. I've been doing Mets to the bones for 11 years now and have gone through many treatments. This one doesn't seem too bad, except for the awful nausea I have had each time about 10-12 days after my infusion. Anyone else have this delayed response? I do have significant fatigue as well but that seems to be the common thread with all my treatments.
Looking forward to getting to know all of you. And I sure hope this one works
0 -
Hi Susan...and wow 11 years...thats great. Glad you are Bone Mets only. I do not experience the nausea you have. Doxil is very easy so easy that I am praying its working! Welcome to the thread.
0
