All About Doxil
Comments
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Hi Bridget: I have my bone scan tomorrow and finally got the CT scan straightened out but now not getting that until May 10! I seem to be getting further away from a treatment start date rather than closer! I've been having quite the time with the whole ascites thing. Because the abdomen is filled with fluid, it limits how much I can eat and drink, so I've not been eating much, which isn't helping my energy level. All in all not a good night last night but I feel a little better this afternoon. Very tired of this and would just like to get on some treatment that will start helping the ascites issue.
Keeping you in my prayers!
Cindy
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Hi Cindy:
I'm glad you've finally got your scans scheduled but hate that treatment is delayed. I know how frustrating that can be. I'm managing the Doxil so far. I'm just really tired all the time so I'm sleeping a lot. I don't have much of an appetite and am fighting constipation (sorry...too much info). The bottoms of my feet are still blistered from the Taxotere which makes it agony to walk. I pray the Doxil will be effective.
You are in my prayers!
Bridget
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Hi Everyone... I'm on day #18 after my first Doxil and I"m dealing with extreme fatigue... mouth sores are gone, but I do have indegestion and loss of appetite. I'm a little concerned that I'm not gaining any strength back. I lost 6 lbs without trying.. I'm going to email the office and see what they say on Monday. We'll see.
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Hi Tina - I’m glad to hear that the mouth sores are gone, but sorry about the fatigue and exhaustion. I’m on Day 10 since my 1st treatment. No mouth sores yet. Some fatigue. Seems to get a little worse each day. Doc said to expect that. Still struggling with my blistered feet which resulted from the Taxotere. Appetite is off and on.
Please keep us posted after you talk with your doc. In the meantime, you remain in my prayers! He’s carrying you through it.
Bridge
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Thank you Bridge... I don't want to say I'm glad to hear you are experiencing the fatigue at day 10... but it's reassuring to me that this fatigue I'm dealing with is probably from the Doxil. I'm stage IV and I'm concerned that the cancer is kicking my butt not the chemo. Thank you for your prayers and I will keep you in mine as well. Tina
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I understand your concern. I’m Stage IV, as well. I’ve developed new pain in recent weeks in other areas of my spine. It’s scary. I pray the Doxil will work.
🙏🏻🙏🏻🙏🏻💕💕
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I’m 11 days out from my first Doxil treatment. My BC is stage 4 and only in my lungs and nodes. I was in bed for nearly the whole first week. The fatigue is miserable although it has eased a bit. No other side effects, but I’m sure more will come after the 2nd treatment. This is my first chemo so everything is new and scary. I didn’t lose a single hair yet, but I heard it will happen at some point. Anyone with hair loss? I quit AA after 3 months. I’m not usually a quitter, but I couldn’t deal with side effects. I lost 25 lbs during those 3 months and now 5 more on Doxil. Good luck and prayers for all of us. Nancy1
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Some tips from my treatment nurse****
Stay hydrated -water, Gatorade, popsicles *
Rinse mouth daily with salt water,*
Was hands repeatedly *
Do not rub fingers together *
Wear rubber gloves *
Eat frozen grapes or blueberries *
Boost drinks (chocolate is good) *
Aveeno for hands and feet *
Soft toothbrush *
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Hi Nancy!
I’m about 11 days out since 1st Doxil treatment. This is my 5th chemo drug. I only have bone Mets at this time, but am due for PET scan soon. I’m dealing with fatigue, as well. I had already lost my hair with other treatments. I took a 6 week hiatus to build up my strength and some of the hair is trying to grow back. I’m sure I’ll lose it again. No mouth sores yet, but still dealing with blistered feet which developed while on Taxotere. I understand the same hand/foot syndrome is a side effect of Doxil, so I’m not sure if they will ever heal. Aveeno helps some. Ice is supposed to help, but only makes them hurt worse. 🤷🏻♀️
Thank you for sharing your tips with us. My prayers continue for all of us.
Bridget
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Hi All: I've been MIA for a little while. Dealing with the ascites thing but the good news is that I'm having a paracentesis tomorrow to drain the fluid! I'm hoping it will make a huge difference, I can't imagine it won't. Saw my MO and she accelerated things so I've had my C/T scan done now (no results yet) and going Tuesday after the para for the echocardiogram. I have actually now had my first Doxil treatment on May 2nd.! Didn't notice much and it's hard to tell if I have more fatigue with the SEs from the ascites (pressure makes it harder to breathe and can't eat/drink much) cutting way down on my mobility and energy. I did develop a canker sore on the end of my tongue yesterday but it hasn't amounted to much. No other mouth sores, thank goodness. I got my lab test back from those drawn on May 2nd, and my tumor markers, which have always been very sensitive to any changes/activity, only went up 5 points since last month! With all the issues I've had with the ascites, you would think that they would have zoomed up 20 points or more, like they have before. Not exactly sure what to make of that.
Nancy, thanks for joining us! Prayers for all of us!
Cindy
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Cindy - I’m so happy to hear that you have had your first treatment! Waiting is the worst! Praying that draining the fluid will give you relief! Praying that it all goes well.
Always praying....
Bridget
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Bridget, thanks for your prayers! I was glad everything got bumped up, even though I had the treatment without having the echocardiogram first. My MO said she was not worried about it as I have never had heart issues. Just so anxious to get beyond the whole discomfort of the ascites...it's debilitating. Hope you're finding treatment tolerable and wishing it helps us all!
Cindy
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Let me know how it goes tomorrow. 🙏🏻🙏🏻💕💕😊
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Cindy, Hoping you will be feeling better soon. Keeping us all in prayers. Nancy0
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Cindy -
Just checking on you and sending you a smile and hug. I hope today went well. 😊
Bridget
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Hi All! My paracentesis yesterday was a breeze! A little numbing with lidocaine and I didn't really even feel him put in the needle/tube. It's a very small tube anyhow but it sure did the trick! They drained 5 liters of fluid out of my abdomen! There is some left but they said they don't usually drain it all as people can pass out or lose their equilibrium from draining. I do admit, when I stood up, my body said "Whoaaaa! Where's all that fluid gone?". It was a strange but good feeling. If you ever develop ascites, please don't hesitate to ask to get this done, you will be so thankful you did!
As for Doxil, I'm not seeing a lot of SEs other than the one canker sore on the end of my tongue. I was pretty dish-ragged already from dealing with the ascites so I can't tell if that is part of Doxil or part of the ascites. I do know I can now bend over and tie/untie my shoes...LOL! I have noticed more pain in my spine as I have many mets there but I'm not sure if that is the Doxil working or just the extra stress caused on my back from carrying around that fluid. Realizing it's only my first treatment and SEs are cumulative, I'm sure there is more fun to come.
How are you all doing?
Bridget, thanks for checking on me!
Cindy
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Oh, Cindy! I’m so thankful that you got some relief. An answer to prayers! I’m a dishrag too. My tongue is sore but can see no actual “sores”. My biggest issue is my blistered feet. Every time I think they are healing another blister appears. It’s frustrating. I can’t stand/walk for any length of time. I can’t sit for long because of the pain in my lower back (one of the areas of bone Mets)...so, I relegated to lying down. But it could all be worse. I just pray that the Doxil works!
Thank you for giving us an update. I was worried!
Praying for us all....💕💕🙏🏻
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Hi Ladies, Im almost 21 days from my first Doxil treatment... Not sure if it's working... I've noticed more aching in cancer areas then I did in the past. And I'm still dealing with Fatigue and lack of motivation quite a bit. Next week I have radiation on my neck and I start my y90 procedure. This is my chance to get the cancer out of my liver because it doesn't seem to be happening with anything else. I'll keep you all posted!
Tina
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Tina,
Good to hear from you! I'm very interested to hear about your y90 procedure as I too have liver mets. I'm off to a golf group BBQ this afternoon but I'll catch up tomorrow.
Cindy
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Hi Tina -
Thanks for the update. What’s the y90? I have only bone Mets not liver (yet). Just curious. Hope your next treatment goes smoothly.
As always, praying for us all!
Bridget
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Hi ladies, Just checking back in to read and to see how everyone is progressing. Today is 15 days since first infusion. I was very restless for a few days and finally took an Ativan. That calmed me right down. Also had a slight headache and low back ache which have since resolved. I was feeling good yesterday when I went in for my mid month check up. My potassium was too high, so I received an infusion of liquids. Found out later in the afternoon that the levels returned to acceptable level. I have no other symptoms other than fatigue as expected. Surprisingly I haven't lost a single hair, but 2nd infusion on the 23 mY produce loss. Cindy, so glad you lost the fluids. 5 liters is a lot. Tina good luck with the y90. Is anyone close to getting a scan? So hope and pray this Doxil works for all of us. Loving thoughts and prayers for everyone, Nancy
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Hi All, Nancy, I'm glad to hear you're doing OK on Doxil. I, too, had a lower back/pelvis ache after I had it. I didn't know whether to attribute it to the Doxil or all the fluid I was carrying around. I also had Zometa when I had my Doxil and that will sometimes give me aches and pains for a day or two. Right now, my insides are sorting themselves out with their new found room! I can actually eat a normal sized meal now which should help with my energy level. I've been feeling really tired, almost sleepy, the last couple of days. I have slept well Weds. through Thursday nights, so that has helped.
My MO told me I wouldn't lose my hair with Doxil, Nancy. Did yours tell you you would? She said that was one of the benefits of Doxil! I won't get another scan for at least 3-4 months, I think. My MO will evaluate the tumor markers when I have labs done on the 23rd when I see her. Actually, the two scans I had done, the bone scan and the CT, didn't really show progression, in fact, it said the lesion on the liver (only mentioned one when I have two...?) was slightly reduced. I'm not sure what to make of that and will discuss it with her on the 23rd. I hadn't had the CT scan yet the last time I saw her.
Hope you all have a great weekend and lessening side effects! Happy Mother's Day to those that are!
Cindy
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Hello My Friends!
I’m glad to hear that you’re both managing well so far. I am, as well. My hair had begun to grow back during my 5+ week hiatus from chemo (Taxotere), so we’ll see if it continues to grow. I’ve found the Doxil to be relatively easy as compared to all the other chemos. I still have blistered feet which makes it so difficult to walk and fatigue. My mouth has become sore but no visible sores yet.
I’m due for scans. I’ll ask doc on my next appointment on the 23rd.
Had a nice visit with 2 of my grandsons today, one of whom is spending the night with us. The other will be back tomorrow with their mother (my daughter) to “celebrate” Mother’s Day. When I think about stopping treatment, I see them (or FaceTime with the one in NC) and I’m reminded of why I need to continue.
I wish you all a very Happy and Blessed Mother’s Day.
Praying for us all, continually. 🙏🏻🙏🏻💕
Bridget
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Cindy, My MO did not say I would lose hair, but his PA said there is a possibility. They always say ‘everyone’s different’. I am happy that I feel quite well except those few days immediately following infusion. I fight against the fatigue, but next time I’ll relax and just try to ride it out. Happy Mothers Day to those that are.🌷🥀🌷🌷Nancy0
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Happy Mother’s Day
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Hi All, well, just kind of treading water here in Las Vegas! I'm not feeling bad...just not feeling really good! Hard to describe but just when you know you're not feeling great but just can't put your finger on why. Good thing is my system is readjusting to being able to eat and process that and not rolling around like a beach ball. The one canker sore I had on my tongue mysteriously just disappeared one day and none have appeared to replace it so that's a really good thing! I had mouth sores with Affinitor and they were very unpleasant!
Nancy, glad your hair is staying put! At this point, mine needs to be cut and there are days I'd like it to be totally gone just for the lack of maintenance that brings. Will solve that problem when I visit my hairdresser on Weds.!
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Wallaby, I’m also not feeling very well....not sick but just ‘so so’ as people used to say. I have decent mornings but then fatigued afternoons. I have my 2nd infusion next Thursday morning and if it’s the same as the first I’ll be in or on the bed for a few days. I lose my appetite and that’s not good. I’m a little on the thin side thanks to Afinitor, and I can’t afford to keep losing. My son has been in charge of the kitchen and shopping. He is a fine cook and is willing to help me keep my weight stable. He prepared French toast and bacon for lunch. It was delicious. I hope you also have some help on your down days and that you will have more better days soon. Praying that Doxil works for all of us. I quess we are all waiting for someone of us to have their first scan. Love to all, Nancy
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Hi Nancy, sorry to hear you are not feeling well either. I did feel slightly better yesterday but nothing to write home about! I'm thinking maybe feeling slightly better has something to do with being able to eat more than I did when I was dealing with the ascites. It's important to keep our weight as stable as possible. It's great that you have your son there to cook and shop for you. That is a God-send! I have one child, my son, who lives in the Seattle area. He recently started his own business so is busier than a one-armed paper hanger! I live with my Labrador, Bailey Ann, and my two cats, Foxy and Lucy. I have wonderful friends here who keep tabs on me and will even go to the grocery store for me when I don't feel well enough to go. I thank God for them every day!
I will be interested in seeing what a scan has to tell me when I get to that point. My last scan, CT w/without contrast on May 2nd., said that the lesion on my liver was smaller than the previous PET in July, '18. And that scan was before I had my first Doxil infusion, so Xeloda did do something for me, it just didn't keep my tumor markers in check. I was reading another thread here where someone was describing their tumor markers at around 1,200! If mine were that high I would be in cardiac arrest! This disease sure does produce some highly variable results in every one of us. I see my MO on the 23rd, A.M. so I will be thinking about you having your infusion and hoping you aren't sent to bed by it. They have not scheduled mine yet but I think it should be the next week after my appointment. I will have labs on the 23rd. too so that will be interesting as well.
I hope you have a good weekend! Cindy
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Hi Nancy and Cindy:
I think we're all in the “feeling so-so" category. Other than fatigue, my first treatment wasn't “too" bad; however, Sunday (Mother's Day) afternoon, I was hit with severe diarrhea which lasted around-the-clock until late Wednesday night. No nausea or vomiting. Thought I would have to see doc for fluids, but it finally wore off. The lack of sleep for 3-4 days did not help the exhaustion.
I'm having major foot issues (Hand-Foot Syndrome). I can barely walk on them. As soon as I think they are on the mend, then new blisters show up. I'm keeping them moisturized and have tried ice (which INCREASED the pain). This started right after my last Taxotere infusion in March and has not let up. That coupled with the diarrhea had me ready to throw in the towel on Tuesday. I wonder, sometimes, if it's all worth it. I'm sorry to be whining so much. There are so many others so much worse than I am.
I see doc on Thursday for monthly visit, labs, and 2nd Doxil infusion. Not sure if he'll schedule scans at that point.
My prayers continue for us all. 🙏🏻💕
Bridget
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Bridget, I'd say you have reason to "whine"! We all feel that way sometimes and I felt that way dealing with the 5 liters of ascites. I had the diarrhea thing when I went off Affinitor last May. In fact, it was so bad, I finally had a friend take me to the ER and they admitted me for 5 days because it wouldn't stop and I was very dehydrated. Tested me for CDIF and everything else but couldn't come up with anything other than the general term "gastroenteritis". I finally got rid of it but I was totally trashed. The SEs of Doxil say it gives you diarrhea but I, apparently, am just the opposite! Haven't had any diarrhea and have to take stool softeners and Miralax to get the system to work, and begrudingly at that! Not that I wish diarrhea on myself but I'd like to find a happy medium!
Have you tried Lansinoh for your feet? I used it on my significant other when he was undergoing radiation to his throat from tonsillar cancer. The radiation onco kept asking him what he was using because he said other patients, who had the same thing and had had that many treatments, skin looked like hamburger and his was fine. It's pure lanolin and originally made for nursing mothers to use on sore nipples. I use it on my hands then put on nitrile gloves at night. My feet haven't been as bad as my hands but sometimes they burn. I've noticed since I've been off Xeloda that my hands are smoother as opposed to peeling all over but they are redder and more burning than they've been before. The Lansinoh is really thick and thins out a bit as it warms up but still thicker than a creme or vaseline. If I was to use it on my feet, I would put it on and wrap them up in plastic food wrap as the Lansinoh will be absorbed by any kind of socks. Don't know if it would give you relief but it's worth a shot. Any chain drug store carries it in the nursing supplies section or you can buy it on Amazon.
It looks like you, Nancy, and I are all having appointments on Thursday next week. I hope we all get good news.
I'm hoping you have a more comfortable weekend and coming week. Please keep us updated on how you are doing! And I, too, will be praying for us all!
Cindy
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