All About Doxil
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Hi Lucy, You are so cute , and much loved I'm sure.💖💖. My kitty , Abbey, has to have surgery. She was restless and in some pain. Vet gave her a 2 week antibiotic shot. She is fine now, but they found 2 bladder stones and the have to be removed or could be a big problem later. Cost so far $1200.
Now about the doxil. I have been in bed for 7 days. Nothing but misery. Weak and some nausea. Each treatment puts me down with major fatigue. Has any one had a chemo that wasn't this bad? Well it's back to bed and back to prayers for all of us. Nancy (bye Lucy)🐾
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Hi Nancy -
I’m so sorry you’re not feeling well. I had my 2nd Doxil treatment last Thursday. I’ve been fairly good except for the blistered and peeling feet. Today, however, I have been totally exhausted and have a return of back pain. The Doxil has been easier than other infusion chemos I’ve had (fewer digestive issues and nausea). I wish I had helpful tips for you. I can only say rest as much as possible and let your doc know the effects you’re experiencing.
I’ll be praying extra hard for all of us! 🙏🏻🙏🏻💕💕
Bridget
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May you have heaven in your heart
Starlight in your soul
And Angels all around you
♥️Blessings for all. Hope everyone has a nice weekend with plenty of relaxing. Nancy
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💕💕
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Nancy, I'm so sorry to hear your kitty has to have surgery. I'm sure it will turn out OK...Lucy sends her hugs!
And I'm also sorry you are feeling so bad. I wish the treatments could be easier on you. I had 3 liters of fluid drained today so I am feeling better, although I did not feel as bad when I went in this time as the last. Tomorrow I will get my Doxil and Zometa. Good thing there is a golf tournament to watch on TV this weekend as I command the family room from my recliner!
Here's to feeling better and many prayers for all of us!
Cindy
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Hi Bridget: Glad to hear you are doing OK even if you are fatigued. My turn comes tomorrow. Please keep us updated on how you're feeling!
All the best!
Cindy
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Hi Cindy! How was your treatment?
Bridget
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Bridget: I am somewhat surprised at how good I feel today! No need for any Zofran (anti-nausea) pills today or yesterday evening. I am waiting for the other shoe to drop, however, knowing that fatigue or nausea can hit at any time. I'm sure the paracentesis has something to do with my feeling better and having more energy, combined with being able to eat a more normal amount because of the para. Not that I'm out mowing my lawn in back! I'm not quite that ambitious and my gardners will be here shortly to do it! I will be up and down most of the day as I got a new Shark stick vacuum that I LOVE so will be vacuuming the mountains of Labrador hair wafting around my family room!
My treatment this time took forever! I got there at 10:45 a.m., had labs drawn and then about 11:20 went back to start treatment. I got home at 2:00 p.m. and it's only about 20 minutes away from my house! I get the Zometa at the same treatment so that takes about 20 minutes extra on top of the Doxil etc. The good part of that is they only had to stick me once to get the IV in!
So, so far, so good! I do have some pain in my spine which I believe is from the Zometa and I hope means it is filing in those holes that are there and attacking what cancer is still there. It's a pretty consistent reaction to the Zometa for me.
Hope you're doing well and have a great weekend!
Cindy
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And the mouth sores have raised their ugly heads......
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Bridget: So sorry to hear that! I hate those things. So far, I have had a couple from the first treatment but they went away fairly fast. I hope they don't show up from this most recent treatment. I hope they make a quick exit for you!
Cindy
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good morning all, kitty *abbey*. Is at the animal hospital to have her bladder stones removed today. I will get a call later after surgery to let me know when to pick her up. She has to eat and pee before they release her.
I won’t be getting doxil this month. I’m still trying to recover from the last one. I wish I knew why it hits me so hard. It almost feels like I am highly allergic to it. In addition to fatigue I have an aversion to food (more weight loss), I cough non stop, sneezing and itching. Everyone else seems to be tolerating it quite well. I talked to my mo and we are going to look for other options. My low kidney function limits my options. I might have to go to wait and watch mode unless I can go back to a hormonal that I already had way back when. Would love your thoughts on this.
Hope you and all your furry friends are all feeling well. Nancy
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Oh Nancy, I'm so sorry. I do understand your frustration. I have major side effects with every drug they've used. Ibrance was the easiest...was on it for 2 years before it stopped working. So we had to go back to infusion. The 1st two were ineffective and came with MAJOR side effects. Don't know about Doxil yet. Doc is waiting to do scans after 3rd treatment later this month. I am so fatigued, but have difficulty sleeping. My feet are blistered to the point that I can barely alk. And now I've developed mouth sores all over my mouth and, from the way I'm feeling, they've spread to my throat.
When we realized that the Ibrance was no longer working, we switched to Abraxane. It made me SO SICK (especially) in the digestive areas. After several treatments (1 every two weeks) my tumor marker kept rising.
So, we switched to Taxotere and Cytoxin, which I had when this evil stuff came back. It was VERY EFFECTIVE in 2015/2016. It lowered my TM to the point that I was able to switch to the Ibrance pill. This 2nd time to try it yielded no results and the side effects were HORRIBLE. So,we're on the Doxil. I'm so tired of it all. Just “sick and tired" of being “sick and tired" as, I'm certain, we all are.
I hope your kitty's surgery goes well. I know how much emotional support our fur babies.
Praying extra hard today for all of us.
Bridget
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Nancy: So sorry to hear you are having such a difficult time with the Doxil. I would think they could give you something to head off the allergy-like symptoms you are having. I don't have an aversion to food, just suffering from a loss of taste...I only have about 5-10% of my sense of taste (and smell) but this has been going on for a long time now. I eat because I know it's the right thing to do, not because I enjoy it. I haven't seen my tumor markers yet so don't know if there's been any improvement from the Doxil.
I go for my port placement on June 17th. It will be much easier on me and the nurses that have to put the IV in!
I know Abbey will be fine with her surgery. I have been lucky that my two have not had any health issues. My Labrador did have melanoma of one of her toes and had to have it amputated but she's fine now. I'll say some prayers for Abbey and of course, a lot for you to overcome all these SEs!
Cindy
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My son brought my Abbey to me this morning. She was so excited to see me and had the sweetest little meows to “tell” me all about the terrible adventure. She rolled over for me to stroke her poor tummy. She has 2 pain pills one for each next 2 days. She already jumping up on things while I gasp!
Bridget, You have been through so much. It’s just a horrible way to live and like you I am so sick of being sick. This doxil is no picnic, but there are worse treatments. I’ve been in treatment for 9 years, and was doing okay until A/A and now doxil. I had my first diagnosis in 1987 skip ahead 28 years to stage 4 mets to lungs. More prayers coming right now for you and all. Nancy1 -
Cindy, The port will be a lot simpler and less painful. Good luck on the 17th. I lost some taste, but also things don’t taste like they are supposed to. I’ve had some nausea.so almost afraid to eat. I’ll see the doctor on the 13th. I’d like a scan. I have no idea what’s happening since A/A. Hope you are feeling well. This just seems to go on and on, but it’s so helpful to have friends in this little group. Prayers, nancy0
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Nancy: I am so glad you have Abbey back and she's OK! They are very resilient creatures. Yes, the port will be a lot easier as I am a hard stick in my left arm. They (MO's office) have started using my right, surgery side for blood draws now and I'm not any the worse for wear. I had a port the first time around when it wasn't an option because of the A/C. I don't mind having it put in as it's a simpler procedure now done by an interventional radiologist.
I actually went to Costco today as I had to pick up a prescription anyway so did a little shopping. I got through it but it tired me out! My strategy is to plan one activity outside the house per day as more than one seems to really wipe me out, especially when it's hot here (100 degrees now). I feel fortunate, at this point, to be able just to do that.
I surely hope you start feeling better. Seems you should have a scan to really see what's going on. And, yes, it is nice to have friends who are dealing with the same things!
Prayers,
Cindy
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Bridget, I hope you are feeling good today. I have just had one mouth sore appear today but it's not too painful. Time for the salt rinse! Praying for all of us to make some progress on Doxil!
Cindy
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I’ve been attempting a post to you and Nancy, but my iPad is giving me fits! So, I’ll just say the most important thing and save the rest for later.
I received a script from Doc for “Magic Mouthwash”. What a Godsend! After initial rinse with it my mouth felt as if I had had 10 Novacaine shots. The major numbness wore off but the soreness has been abated substantially. I was unable to reach to spots in my throat, but I can deal with it. I would HIGHLY recommend keeping it on hand for flare ups. My feet are no better.
Nancy, I’m so Glad your kitty is home and doing well.
Cindy - the port will be a breeze!
Love y’all and, as always, praying hard for us!
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Bridget: I have the Magic Mouthwash! My MO gave it to me when I was on Afinitor. I had better luck with getting rid of the mouth sores with salt and baking soda but that's just me. I'm glad you are getting some relief with it! Sorry your feet are not improving. Mine are holding their own, sometimes just feel hot. My hands are better than they were but not completely healed. I am losing a lot of hair now. For so long I hardly lost a strand even when brushing it! OH well, been there, done that!
Cindy
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Cindy:
I’m so glad you have the Mouthwash on-hand if you need it. The baking soda and salt did nothing but irritate my mouth. Funny how reactions are different for each person.
My hair is actually trying to grow back. Doc said I may not lose it....whatever - been there, done that. The downside is that I’ll have to shave my legs again. LOL 😂
I wish there was a “Magic” lotion for my feet. Misery! As long as I stay off of them it’s tolerable, although I still get waves of sharp pins and needles pain. I can’t sit for long because of the low back pain from bone Mets. So, I lie down a lot which makes me feel totally useless. I’m blessed with a wonderful husband and thank God every day for his love and care of me. I’m also grateful that I have had no issues with my hands.
Gonna try to sleep now. Woke up at 1am and have not been able to fall back asleep.
Hope you have a great day, my friend. God Bless You! 🙏🏻
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Bridget: I hear you about shaving your legs! Still having to put up with that so far! I think I may have been "channeling" you as I woke up last night (or more accurately, this morning) at 12:45 and could not really go back to sleep. I couldn't get comfortable, it was too hot, then it was too cold, my feet were burning, my back hurt...you name it, I was uncomfortable with it! I finally did fall asleep about 5 something and got up at 7:15. Oh well, hoping for a better night tonight, for both of us!
Bless you too and your wonderful husband! So nice to have someone to lean on when you need it and for company. Prayers for us all!
Cindy
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Happy Monday, My Friends:
Just checking on y’all and on Abbey!
I’m completely exhausted, but can’t seem to sleep. Some mouth sores are much better with the exception of those which have broken out underneath the back of my tongue and in my throat. I’m using a q-tip to try to reach those areas.
My feet are no better. Their appearance is better...just redness and a little peeling. It’s the pins and needles which give me fits...especially at night.
So, I’ve whined enough to y’all. I’m sorry. Please let me know how y’all are doing.
As always, I’m praying for us all. 🙏🏻
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Hi Bridget/Nancy: My energy level has come down since my vacuuming craze last week but I'm doing OK. As long as I take my Ibuprofen 800 before I go to bed, I usually sleep pretty good. I've found that starting off in a position like you would use to read in bed (propped up), has worked well for me. I usually transition to lying flat at some point, as long as I am not suffering from the ascites. That puts so much pressure on my lungs etc. that I can't lie flat but those seem to be under control now (which makes me hopeful that the Doxil is doing something to prevent my liver from making any more of them!).
My mouth sores usuallly start out under the bottom left side of my tongue. Sometimes I'll have a small one up on the top part of my tongue but so far, they have only been around for 3-4 days and then just go away. I know I probably have some in my throat too as I still have my tonsils and it sometimes feels like I have a sore throat/tonsils.
I also have the pins and needles although not a lot. My feet do the burning thing at night. Hands are tolerable but not totally healed. The bigger issue is how much hair I am losing on a daily basis. It seems to be everywhere! I thought my Labrador sheds a lot...well, I am giving her a run for her money! Hers is just black while mine is blonde! I am actually afraid to wash my hair because untangling it generates a lot of hair in the pick comb and then blow drying it, even more! I guess I'll get to a point where it will get really thin then I'll have to make a decision. Sigh. It's always something!
So there's my rant for the day! We all need to rant or whine at some point to those that are having to deal with much of the same SEs. I hope you are all coping with the SEs as best you can and still enjoying life. That's my goal!
Nancy: I hope Abbey is doing well!
Cindy
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Ladies: I thought I would pass this on from the All About Xeloda page, posted by JoynerL. She created this portfolio to take with her while they are on vacation on their boat. I think it's a good idea for all of us to have one whether we're going on a boat vacation or to relatives, or just end up in the hospital. When I was in the hospital last year in May, even though I was in a hospital in Las Vegas that I had previously spent a week in in 2016, and my MO is here in the valley, I had to start at square one and explain everything to them. At some point I'd like to go to Seattle to see some of my grandkids and this would be a good thing to bring along, just in case. I'd have to dig for some of this information (like path reports) but I could get it eventually. I would change "History of hospitilization..." to only that text.
The following text is all from JoynerL:
I have created a "Cancer Emergency Kit" to take with us wherever we go. It took a while to compile, but my onc loves it! She said that often out of towners end up in their office in bad shape, and no one has access to or knowledge of much of anything.
Here's what's in it, and it will travel with us:
~All ID info, to include emergency contacts and all insurance info
~Physician contact information and contact info for all physicians to be copied on any reports, etc
~Medical history related to BC, in bullet-point form for ease of catching up on the big picture
~Current medications, medical devices (stent), surgeries, and allergies
~All pathology reports
~Recent blood work
~History of hospitalization for hypercalcemia in November
~Copy of advance medical directive
~ Actual scan disks with copies of all miscellaneous scans (I get two disks every time I have a scan: one to save in my own permanent file, since Sloan Kettering almost lost all of my disks once, and one to travel in the emergency kit
All of this is in a "leatherette" portfolio I bought at Walmart for less than $20. All documents are laminated in plastic.
If any of you already have something like this, bravo!
Cindy
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wow! What a GREAT idea
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Hi ladies and our sweet furry friends, Abbey is back to normal, playing as usual and right now she is asleep in her favorite box. Waiting for analysis of the stones to see if she needs special diet.
I have no mouth sores, but instead I have large red patches on both elbows, and some random red dots here and there. I think one elbow looks worse but might be getting ready to peel. I had the same patches from A/A, but on my face. Some redness on hands and feet, but no blisters yet. I’ve had a weird chemo cough since beginning Doxil. It’s just a tickle that flares up, usually when I’m trying to sleep. Cindy, Sorry about your hair loss and the miserable swelling. I haven’t seen any hair in my comb or brush. I’ve been taking biotin since back in the Faslodex days. It’s so difficult to fall asleep and stay asleep. I have been on lyrica for nerve pains in feet.
No more whining today. I will see my MO tomorrow, to discuss next treatment. I would like to go back to a hormonal, perhaps tamaxofin. I did not take it in the beginning, so I am eligible to take it now. My previous MO shied away from it because of side effects, but what can be worse than Doxil.
Wishing you all some happy days, and pain free nights. Prayers continue for all. Nancy
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Hi Nancy, glad to hear Abbey is OK. Sorry to hear about the red patches. Do they itch? I haven't had any of those...yet! Today my feet are really red and burning, same for my left hand, my right hand less so but sore. I have had the cough. Now that I think about it, I'm not sure if I had it before Doxil or only since Doxil but it's like a tickle and a dry cough. Sometimes I really have to forcefully cough to get it to stop.
Does Biotin help your hair? I'm not sure if I'm going to go full bald or just thin it out considerably. Time will tell. Today I don't care about my hair, my feet and hand hurt!
Do you think you will be stopping Doxil? I have been on Ibrance, Afinitor (Ugh!), Xeloda, and now Doxil. Ibrance/Letrozole and Afinitor/Exemestane are estrogen inhibitors. Ibrance worked the best and longest for me, almost 18 months, and with the least side effects. Afinitor, in my opinion, didn't do much of anything. Xeloda, an antimetabolite, at first, knocked my TMs down and then they slowly, and not so slowly later, crept up. My MO says the cancer cells morph, in my case, becoming less sensitive to the removal/inhibition of estrogen, even though my cancer remains classed as estrogen positive. I had really high hopes for Xeloda as many women have been on it for a prolonged time. I guess I should be happy I have been around for these last three years, and I am!
I can only pray that there is some kind of breakthrough in treatment that will work for all of us!
Cindy
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Hi ladies, My appointment on Thursday went well. MO has an idea to send my pathology to Boston for some specialized genetic testing. He ruled out hormone treatment and after a scan would like me to try taxol. If anyone here has tried that treatment please let me know all about it. I'm so afraid I won't tolerate it well, after my trial of Doxil and the side effects. Praying for all........Nanc
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Hi Nancy,
I'm pretty sure Taxol, under the name Paclitaxel, is what I had the first time around, after I had the A/C. At that point, it was a breeze compared to A/C. I got tired just like all chemos make you but the side effects were way less than A/C. I don't remember having any nausea or anything like that, just the fatigue. At that point, I had no hair but it started to grow back while I was getting the Paclitaxel, just like my MO said it would. Of course, that was 13 years ago so my memory might not be totally accurate but I do remember thinking "Gee, this is wayyyy easier than that other stuff!". My current MO does say I have a pretty high tolerance for the SEs that go along with the various chemos so everyone might not have the same experience I did.
If this is what you're moving to Nancy, I wish you all the luck with it! Prayers for all!
Cindy
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Hi Cindy, Thank you for your comments on taxol. I have been so sick on Doxil, but I am beginning to think I might react badly to what ever the treatment. I'm so glad to know that if my MO moves me to taxol it might not be too bad. Of course, always the worry that it might not work. Thinking of you all and sending smiles and prayers. Hope everyone is having a good week. Nancy
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