All About Doxil
Comments
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Hi Nancy,
I'm glad to hear you are feeling good! I have the tickle in my throat at times, like every time I step foot in a grocery store!, and coughing to get rid of it makes my nose run and then my eyes water! I had the watery eyes and runny nose when I was on Ibrance. Going off Ibrance helped that a lot. I think my symptoms are a combination of allergies and the chemo. Alavert used to help my allergies, now it seems nothing helps. Yes, I take Claritin, at least the Costco version, and sometimes I take Xyrtec, neither really doing much to stop the flow. I take the Claritin after I have my infusion because I get Zometa also and it's supposed to help with the effects of the Zometa. Not sure if it does but last month I felt pretty good after my infusion but I attributed most of that to my hemoglobin being near where it should be. The Alkaseltzer must have a decongestant in it....I think I'm going to try using a decongestant instead of the allergy pills for a day and see how that works. I've also used Flonase when I lived in Washington and that used to work. Used it awhile ago and it didn't do much. I'm going to ask my MO tomorrow if there is anything else that will work. Sigh!
Again, I'm so glad to hear you are feeling better and I hope it continues! I have my next treatment on Wednesday this week so we'll see if I need the Aranesp shot again.
Cindy
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Cindy, I hope your side effects are mild or not there at all from your recent infusion. I had an appointment with my internest and he thinks my nagging cough and stuffy head is caused from a virus I might have picked up on one of my trips to the grocery store. I started on an antibiotic and am continuing the Alkaseltzer cold plus but only I tablet instead of 2. Now I have a plugged ear. Lol. I am trying now to avoid crowds, but already miss getting out. I don’t have eye issues, but I did when on Ibrance and it drove me crazy. Next infusion on Thursday next week. Do you have or need any extra help around the house or with meals? I am managing on my own, using freezer meals when I’m on my bad days. I seem to be more tired than usual and am wondering if the cumulative effect has kicked in. How many more treatments will you be having?
Hope you are comfortable and finding some joy in every day. I would love a dog for company, but I know it would make somethings more difficult. I keep watching them on my vet shows and I guess I’ll have to be satisfied with that. 🙏😸🐶 Nancy0 -
Hi Nancy! I hope you are doing better! I'm doing OK, not quite as much energy as last time after treatment but nowhere near like I was before the transfusion! I manage to putter around the house incessantly vacuuming up dog hair and dust. My dog, Bailey, is a sweetheart and is a lot of company, keeps my big cat Lucy in line, but she sheds like there is no tomorrow! I try to let her swim every day as it is good exercise for her joints (she's 9 now) when it is shady enough for me to sit out there throwing the ball in the pool!
Sometimes I find cooking, even for one, to be tedious every day. I go out to lunch with friends once a week and that's a nice break. Sometimes I order something larger than I normally would eat for lunch so I can have it for dinner too and not have to cook! And sometimes I don't feel like eating a normal sized meal at dinner time. As for house work, now that I have more energy, I'm better at keeping up with it but still am contemplating getting a house cleaner to come in every other week to do the heavy stuff like washing floors. My house is all ceramic tile downstairs, except for my office, and almost all carpet upstairs, except for the bathrooms and laundry room. I know if I didn't have pets it would be a lot easier to keep the place clean but they are my comfort.
I don't know how many more treatments I'll be having. I think it's a month by month thing depending on my scans and electrocardiograms. My last scans on August 12 & 13 were good, my MO was very happy with them. Strangely, my tumor markers went up 2 points, from 71 to 73! Not significant, I know, but I really was looking for them to go down based on the scans and how I am feeling. Oh well, at least they are not up in the 200s! This Thursday I have another paracentesis, hopefully to get rid of the last of the ascites. Not near as bad as it was. My MO thinks the ascites may be coming from a couple of "peritoneal implants", which is to say, a couple of spots of disease in the peritoneum. They were noted in the scans perviously so unless they grow, we won't worry about them. My MO says better there than my liver!
I hope you do well with your upcoming infusion and get rid of the virus.
Cindy
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Hi All,
I hope you all are doing well and your absence from this site is just because you are busy! I'm doing pretty well, getting Aransep shots periodically when my hemo drops below 10.0.
Please let me know how you are doing!
Cindy
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Hi Cindy, I'm still here. I switched treatment to taxol in August. A scan coming soon and I'm hoping for enough of a remission to be able to stop treatment for awhile. There has been some conversation of following up with tamoxifen. Glad to hear that you are okay. I have been thinking about you and happy to see your message. Maybe Bridget will stop by soon. I hope so. 🙏 Nancy
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Hi Nancy,
Sorry I did not answer you before now...I would have sweared I did but, sometimes the memory is not what it used to be! Did you get to stop treatment? I'm doing OK, hemoglobin just hanging in there. Got an Aranesp shot last Weds. and another two weeks before. My hemo still hangs around 9.5-9.8. Anything below 10.0 and I get the shot. I sure would like to feel like I did after I had the transfusion! Like a real person.
I hope you're doing well. Don't know where everyone else went to but I hope they're doing well also.
Cindy
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Here I am again because Gem/Carb failed. UGH. Now what's next?
I'm meeting with my IR this week to discuss my PET results/ images. I think another y90 would be the best option for me because it's been the only TX my liver mets have responded to, I got 18 months of inactive liver mets from it in 2017.
Four lines of TX have failed. Will Doxil be my fifth? After I have and recover from y90s , I think this is one that my MO might pick for me. Thankfully, my lung mets are stable and my liver numbers look good. It would be nice to not have to lose my hair. I've kept my white ponytail through all the ones so far. Only going once a month would be nice, too.
Wallaby. I had a lot of trouble with HGB and ANC on Gem/Carb. My HGB was 5.5 a few weeks ago at the ER. My ANC got down to .75 a couple of times. 💞
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Grannax2: I've been through Ibrance/Letrozol, Affinitor/Exemestane, Xeloda, and now on Doxil. I was pretty disheartened when the Xeloda stopped working because so many had reported being on it for long term. When my MO talked about infusion chemo, I thought "I'm done for now!". But, it hasn't worked out like that. I do go once a month for my infusion, where I also get my Zometa. Every two weeks (either stand alone appointment or my MO appointment) I get my Hgb tested. At first I was only getting blood drawn at my monthly MO appointment (my infusion is always the next day) until I had an episode much the same as you described with low Hgb that landed me in the hospital overnight for a blood transfusion. That's when I went to every two week blood draw/testing Hgb. It's worked well. When my Hgb goes below 10.0, I get the Aranesp shot which brings the Hgb back up over ten. So my MO has taken care of the Hgb issue. I also have lung and liver mets, as well as extensive bone mets. They are all stable at this point. I've never been offered Y90 but I think if the liver mets get out of hand, it may be on the table.
Bottom line is I am doing well on Doxil. I have a port so getting the infusion is a non-issue, although they still draw blood from my arm! Yes, I do get tired and I'd like to feel the same as I did the day I left the hospital after the transfusion! But all in all, it's very tolerable, for me. You may have some trouble with hand and foot and maybe mouth sores. My MO just reduced my Doxil dose from 90ml to 72ml to see if I could get some relief from the mouth sores I had over the last month. I have a small one now but not nearly as bad as before the last infusion (10/16). I don't have any gastro issues or any other skin issues beside the H&F. I think my hair has thinned a little but no bald spots, so far! Prior to being on Doxil, my hair was thickening up, which is unusual for me because I am hypothyroid and even with meds, your hair gets thin. From August til October 15, my tumor markers (pretty accurate for me) dropped from 73 to 50. To be truthful, I have no expectation of ever being NEAD or certainly, NED. I'm hoping I can continue keeping the lid on the disease along with having QOL.
If you get put on Doxil, we will welcome your participation on this thread! Not many of us here but we do keep in touch!
Cindy
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Thanks, wallaby. Very encouraging information. I'll find out this week about the y90 and on November 4th I'll see my MO. If my IR says no to local procedures, I'll ask her about Doxil. Do you take pre meds with your infusion? With Gem/Carb I was able to talk them out of giving me Dexamethasone and anti nausea meds. I did just fine without them. Each of them have unwanted SE for me.
The same TX failed for me, too. IL, AA, and X. How long ago were you DX? I'm coming up on my 3 year anniversary, although I didn't start IL until January 1, 2017. We are about the same age, too. I'll be 72 in December.
You had Taxol, too. Were your SE the same or worse than on Doxil?
I was first DX in 1992, then 2000, and 2009. MBC 2016. Actually, in 2000 I had mets to my C spine. I had surgery for it and it never came back. I have mets to lung, medistinal lymph node and liver. I would love to hear the word stable for my liver mets. My first y90 procedures were in April and May of 2017. They gave me 18 months of inactive liver mets. Then mets, that were too tiny to be seen, started growing in October, 2018. Nothing has slowed them down since then.💞
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Grannax2: Yes, I do get the anti-nausea with my Doxil. I have had only one occasion where I had to take a Zofran for an upset stomach after treatment. I was diagnosed the very first time in Oct 2006. Had AC/Paclitaxel and 33 rad treatments. After I got done with the AC, the Paclitaxel was a breeze. I had virtually no SEs except being tired and my hair started to grow back. After I completed the rads, I felt like my old self again. Did fine until March 17, 2016 when I was diagnosed with a plural effusion due to a tumor in my right lung. Upon having a CT the same day, they discovered I had 2 liver mets and numerous bone mets. I spent two weeks in the hospital and started Ibrance when I came out. The lowest my TMs got (an accurate marker for me) was 21. Now that they're 50, I consider that to be a victory!
I would compare my experience with Paclitaxel and Doxil as similar but not the same, based on the fact of age and general body condition. When I was diagnosed in 2006, I was 57 and I was very physically active and worked out at the gym regularly. I was very strong for a woman my age. When I was diagnosed with Stage IV at almost 67, I obviously was 10 years older and not as active as I had been. When I started Doxil, I had been "sick" for 3 years and have lost so much strength and muscle mass. I really think being in good shape the first time around helped me recover faster. Now, it's a much longer process with every bump in the road. Also, remember that Doxil is a version of the dreaded Red Devil, AC. It is just coated with Liposomes to make it less harsh on the body.
I would say that if you end up on Doxil, give it a chance, as our bodies always take awhile to figure out what to do with a new drug. Also,, our experiences with the TXs are so individualized.
Good luck!
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Hi Wallaby,
I've been on Doxil for the past 5 months and I've developed darkening and drying of my skin around my torso, and upper arms...have you experienced this strange phenomenon?
I talked to my mo about it, and she dismissed as a SE of the medication, and tried to reassure me by showing me horrendous pictures of hands and feet disfigurement that the medication can cause.
I remain concerned about its significance, could it be a form of fungal infection? I worry mostly about progression....I mean what if it start affecting the look of my neck and face? The coloring and dryness it causes is uneven and unattractive.
Has anyone tried or knows how to fix this problem? when I tried to rub the dry skin off I end up with a wound...not good...
Help!
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My onc just called to recommend Doxil; I hope to start in a couple days. Hello, Wallaby. It looks like you are the hostess of this party. Hi there, Grannax2 and Frisky. Fancy meeting you here. I was just researching Doxil side effects, so I copied the info below for you, Frisky. It is from drugs dot com.
“Dermatologic
Very common (10% or more): Hand-foot syndrome (51%), rash (29%), alopecia(19%), dry skin, skin discoloration, vesiculobullous rash, pruritus, exfoliative dermatitis, skin disorder, maculopapular rash, sweating, acne, skin ulcer”
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Thanks for the info Shetland ...this problem has showed up only recently...it’s otherwise a relatively easy TX...may you greatly benefit from it
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Hi Frisky, welcome to the Doxil thread! I have been fortunate enough not to have the SE you described. I do, however, have hand and foot, which is very difficult to deal with at times. I also have anemia that got so bad at one time that I had to go to the hospital for a blood transfusion. Now instead of having my blood hemoglobin checked once a month when I see my MO, I have it checked once every two weeks and if it's below 10.0, I get an Aranesp injection. I have also had mouth sores. They only appear on the right, upper inside of my mouth. One I had for about two weeks and was reduced to eating out of a straw. Subsequent ones have not been quite as bad. My MO even reduced my last infusion from 90ml to 72ml to see if it would help with the mouth sores ad the H&F. So far, I have a small mouth sore in the same place and my hands are pretty sore. I can deal with the hands thing (my feet have never been as bad as my hands) but the mouth sores really hurt. I hope you do not get them!
So far, so good on the Doxil and my tumor markers, which seem to be a very accurate indicator for me of the activity level of the cancer, went from 200 to 50 since I've been on Doxil. Good luck to you and I hope your SEs lessen as you go along.
Cindy (Wallaby)
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Welcome Shetland! Yes, I started this thread because I just couldn't find anything in other threads that really talked about Doxil, other than a passing reference. As I said to Frisky, I do have mouth sores from Doxil as well as the wonderful Hand and Foot! I had an espisode with low hemoglobin (5.5) that landed me overnight in the hospital for a blood transfusion but I now get my hemo tested once every two weeks instead of once a month and if it's below 10.0, I get an Aranesp injection. So far, the Doxil seems to be working for me as my TMs have gone from 200 to 50. I just had a bone scan and a CT (because my insurance won't pay for a PET!!) so am awaiting those results. I do have terribly dry skin but then, I am hypothyroid and even with thyroid medication, my skin has always been dry. I have not had the skin darkening issue. What I appreciate about Doxil is that not only have my TMs gone down (for how long, who knows!) but I don't have any gastrointestinal issues with it. I was on Affinitor/Exemestane which caused all kinds of gastro issues for me and did nothing to rein in the cancer.
I hope Doxil works for you and your SEs are minimal!
Cindy (Wallaby)
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Just got these results from my bone scan done on Monday:
Findings:
Normal physiologic uptake in the axial and appendicular skeleton. Normal soft tissue and renal uptake.
Extensive multifocal areas of uptake axial and proximal appendicular skeleton, overall distribution and intensity similar to the previous. No new lesions detected.
Impression:
Stable bone scan. Extensive skeletal metastatic disease redemonstrated. No definite new lesions.
Yayyyyyyy!!!
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Hi Cindy,
Thank you for the welcome and starting this thread.
Congratulations on the excellent results from the scan...your success with this Tx is very encouraging.
I'm going to get a scan soon, hopefully it's working for me as well....which will make coping with the SE less stressful.
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Cindy, thank you for telling me about your Doxil experience; it is very helpful. I managed hfs for two years on Xeloda. I wonder how it will be the same or different with Doxil. I am planning to suck on ice and/or popsicles during my Doxil infusion, in hopes that will stave off mouth sores. I had some mouth sores when I first started Ibrance, and wow were they painful. Have you considered trying a dexamethsasone mouth rinse? That is now prescribed with Afinitor, and I wonder if it could help prevent mouth sores with other drugs as well. And you have Magic Mouthwash? I’m glad to hear there may be no Gastro issues. My gut is not happy these days. It’s great that Doxil is working well for you! Now we need a great scan for Frisky, and in two months a great scan for me. Did you guys notice we all three have ILC?
What about pre-meds? My nurse says I have zofran, Pepcid, and Benadryl ordered. And how do you feel on infusion day and the days after? Have you noticed a pattern that lets you plan your weeks?
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Shetland, in my case they administer steroids prior to the infusion. After a few sessions, I asked to do without, but mo said no, I had to have it. The steroids allow me to have tons of energy for about 18 hours and then I gently land back into fatigue, but by then I'm back safely home and in my bed.
It's wise to not be around crowds, babies and pets the first week when we are the most vulnerable to infections and the medication is very active. I try to not plan anything I can't easily get out of the first week following the infusion.
10 days later, I start to feel better and by the end of the month I'm back to my new normal energy wise.
What a coincidence...we are all ILC....what's the odds considering the small percentage....
Except for the day following the infusion, I manage to exercise everyday, nothing major, just a walk to the local parks, or grocery shopping, but it's getting considerably colder here in Manhattan. Yesterday, it was glacial..
Oh...one more thing...the SE are cumulative, so you might not experience anything major the first couple months.
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Shetland: Yes, I have had Magic Mouthwash when I was on Xeloda. My MO wrote me a prescrip for it last month and dear old Aetna would not cover it. It was $87.00 cash price and I figured I could buy a lot of salt and baking soda for $87! I watch what I eat when I have them and I alternate between salt water and baking soda rinses. My MO reduced my Doxil dose last month from 90ml to 72ml to see if it would help with the mouth sores and my hands. I have had one small sore in the usual place but it is not anywhere near as bad as the month before. I just add it to all the other places that hurt!
As for pre-meds, I know I get Zofran and I'm not sure what else. I'll have to ask on Weds. I get Zometa before I get either pre-meds or Doxil.
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Frisky: Boy, I wish I had tons of energy even for 18 hours after infusion! I don't feel bad afterwards, just not much energy. And I know that is due mainly to my hemoglobin levels. After I had the blood transfusion in July, I felt like my old self! I have not been sick since I started Xeloda and then Doxil. I have a lot of pain in my thoracic spine that keeps me from exercising like I would like to. I am going to address that (again) with my MO on Tuesday. The issue is not from the cancer in the bones but from an old injury, as far as we can tell from the MRI/Bone scans. If I could get rid of that chronic pain, I would feel a lot better!
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Nancy, Bridget, Grannax, Frisky & Shetland:
My MO's nurse called me at 5:30 pm yesterday to tell me that my CT scan was STABLE! I had the results from the Bone scan from the imaging website but the CT wasn't there yet. I'm very encouraged by both scans being noted as stable. This is a first for me since I was diagnosed in March of 2016. I'm just hoping they can stay at this point, acknowledging that this stuff is uncurable. I wish all of you getting scans in the near future similar results!
Cindy
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Cindy, for what is worth...regarding body and bones aches and pains...what works for me, like no other, is magnesium citrate morning and evening, good quality omega 3 fish oil, calcium with vitamin D and K2 with the evening magnesium. They have put an end to all the weird aches I would suffer from, and I have had NO xgeva shot in 6 months..
I never inquired, but I suspect there might be some unsettling news regarding the se of that medication, because there's no treatment that my doctors don't like or wouldn't prescribe....
Also, full disclosure, I have been on the FZ and just started integrating the COC protocol in conjunction with the Doxil. My MO knows about this and she approves...thus, when the scan results come out...it will be a bit confusing figuring out what role each played...of course, if there's progression I won't have that problem...
Congratulations again on the confirmation of the tx working so well for you!
As far as your thoracic pain is concerned, try rubbing oil of magnesium, you can get it at a vitamin shoppe, it worked like a charm for my more acute aches...it used to provide instant and persistent relief
You've seen those Fellini movies, when rich old people would go to the spas to bathe and drink the mineral waters to feel young again? They were doing the same thing...absorbing primarily magnesium among all the other minerals...
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Hi Frisky: How much magnesium citrate do you take in one dose? I've seen this discussed on one other thread but haven't gone as far as ordering any. Most of my pain comes from a specific thoracic area - T10-12. There is one place where I have what they described as a "wedge". I presume that's one vertebra angled down either left or right, impinging the edge of the disc. The edges are where the nerves come out from the spine so I think that's where my problem lies. I'll try anything to get rid of it!! I see my MO on Tuesday, the 12th. so I'll ask her about the magnesium and to refer me to an orthopedist. Thanks for the info...glad it works for you!
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Cindy I take 400mg of magnesium citrate twice @ day...
In the past, I have also successfully availed myself from acupuncture, when I could barely walk and the fatigue was unbearable...I happen to know of a real Chinese Practicioner that is just amazing...one moment I can barely get there, and one hour later, I'm galloping home like I'm back to my old normal self again.
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Congratulations on the stable CT, Cindy!
My first infusion went well. I iced hands, feet, and mouth. Still sleepy from the Benadryl, but personally I would rather have that than dexamethasone because when I had dexa with taxol, although the energy day was handy, it started causing crying spells.
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Frisky: I asked my MO Tuesday about the magnesium citate. She said, "It will make you go to the bathroom...diarrhea! Has that happened to you? I tend to be way over the other side on the bowel movement meter so I'm not sure that it would give me that effect! She also said she just gave a class on breast cancer (didn't say to whom) and the only three homeopathic things that were proven to help cancer patients with pain were, CBD/THC, accupuncture and one other I can't remember so it must not have been particularly significant! My son yacks all the time at me about CBD and I would be quite willing to try accupuncture. I asked her to refer me to an orthopedist to take a look at my back to figure out if anything can be done to fix what's causing the pain. I'll see how that works out.
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Shetland: Thanks so much! Congratulations on your infusion going well. I had mine yesterday and aside from a headache last night, I feel fine. I had my MO increase the amount of Aranesp I get so I'll be interested to see if it bumps up my hemo faster or higher and gives me more of an energy bump. Today is golf day so I'll see if I can make it through all the holes. Sometimes I just run out of gas and have to sit out a hole or two. I'm going to try a Lidocaine patch (OTC) today just before I leave for golf. Hoping it might just control it long enough to get through all 9 holes. It's just basically ladies over 50 that get together once a week to play 9 holes at the course near my house. We just play to have fun and don't reallly care about our scores (well, some do!).
I do believe I get dexamethasone but it doesn't bother me at all. I've been getting the headache in the evening for the last couple of infusions, and I rarely ever have a headache. Not sure which one is giving me that, Zometa or the Doxil. I had trouble sleeping last night. Usually sleep just fine as long as I take my Ibuprofen 800 before I go to bed. Oh well, one never knows what causes some of these things and a mild headache I can tolerate for good scans and a lower TM!
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Wallaby, all doctors get maybe two hours of study in nutrition in medical school, it is a well known fact they are totally ignorant regarding healthcare. They are trained to prescribe medications—that they hope—people will need for the rest of their lives.
Otherwise how can we possibly explain the increasing number of sick people and the escalating medical costs in our country?
As far as magnesium is concerned, my stool has never looked better, it's perfectly formed. But that's not what's important. Magnesium serves up to 200 functions and cancer patient lose magnesium every time we go to the bathroom. I read this somewhere...not sure where..
I don't know exactly how and why it works...I only know that if I don't take my magnesium, calcium, vitamin D3 and K2 at night, and Omega3 fatty acids I am in a lot of pain. So, I can only share what's working for me, as these supplements are well know to benefit all people apart us cancer patients.
So happy to read you get to enjoy golf...I used to play tennis, but I cant possibly do that these days...
https://www.livestrong.com/article/491315-magnesiu...
I found this article, but much as been published...
Why Chemo Can Cause Low Magnesium —
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so I'm here at the hospital waiting for my infusion...my MO, whom I adore, has lowered the dose for today because of the darkening of the skin...
She's sending me to see a cardiologist because of the sudden drop of blood pressure..the other day I felt as if I was going to faint...when I measured it it was 80 over 60...it took me couple days of salty foods to bring it up to 100 over 80
Has anyone else experienced sudden bounces in BP either up or down?
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