Doxil, what can you tell me about this chemo treatment?

Good news from PET scan, doxil is working! I had 4th infusion yesterday, hoping for less side effects through more prevention and learning to heal blisters better. Whatever happens, it’s easier to cope with side effects knowing it is working.

I had my second infusion six days ago. My first one gave me mild HFS. Now, I've got a full body rash, dry flaky palms and what may be the start of a blister on one of my palms. I'm also noticing some swelling on the soles of my feet.

I'm wearing "manicure gloves" most of the time. Originally, it was to help lotion penetrate my skin better and to protect my hands. Now it's also keeping me from itching. Nitrile gloves for when in the kitchen or handling litter boxes or other things related to feline bodily functions. Work gloves on when I need to do chores, etc. I live alone, so while ideally I wouldn't be scooping litter boxes or forcing myself to cook so I can then force myself to eat. Very little appetite too.

The rash isn't very itchy. In some places (upper arms, back) it's splotchy. In others, it's more like a lot of tiny red polka dots. It popped up yesterday and the info from the cancer center says to not put anything on it unless told to and to notify my MO. Dry hands didn't seem worth reporting late last week when that started happening.

Real life advice for dealing with these SE? I'm cash strapped, so if I do something like order food, I go pick it up. The first official snow of the year was Friday. 'Tis now the season for brushing off my car most days before I go anywhere. Mental note: Remember where I stashed my ski gloves last spring so I can brush off the car without freezing my hands.

I just kinda feel like crap, physically and emotionally.

Tried to pm you a response re mouth sores, but your Pm'ing is shut off, Stephanie.

Yes, I DO get them. Had successfully used Lysine the last time & still using it. However, my potassium is low (had to add a 2nd blood pressure med a year ago) so I need to do something for that. Tried OJ but it blew open the mouth sores. Maybe if I ice this next time, I can circumvent them? We'll give that a shot.

I think getting the correct dosage is important. My SE's are a bit better with the reduced dose.

I sent you this photo earlier, but it's worth sharing here (again! - let me know if I'm becoming a pain...btw, that's my son in the background to my rear left, seated, with the flame "burning" up his jawline, LOL).

Step One - check!

I had my first Doxil infusion yesterday! The worst part was the ice. But both my doc and my nurse swear that in all the years they have been giving doxil with ice...NO mouth sores on any patient AND limited hand and foot issues. But DANG that was a cold hour. today, day one...I actually feel pretty good. Fingers crossed that keeps.

Sunset

FelineMum

My fatigue hasdefinitely been a lot less after the 3rd and 4th infusions is compared to 1 & 2. I hope that will also be the same for you.

Ten days after first infusion. Been exhausted. Feels like a have the flu.. kinda sucks. Waiting to feel better. Worried about Australia next month.

And Stefanie,

Follow JFL's wonderful advice on here. She knows this Doxil and has helped a lot of us in efforts to keep it from damaging our good parts.

JFL, my dose is now 32-mg. Feeling better on it after 5 infusions of the 32-mg (had 4 of them at 40-mg.). Losing some hair but my scans say it's working.

Now I know why they say we "battle". We are definitely doing battle here, and it's a worthwhile fight.

Hope you all made Thanksgiving a good day, in spite of our tough road we're on. My three beloved "kids".

I also posted this on the liver mets and regional/targeted liver treatment threads:

Well, I had a PET scan on Saturday and my DH was able to access the results today - bones inactive/stable (going on 4 years now), all areas in liver in both lobes where I had Y90 inactive and shrinking. However, there are two new lesions in my liver - one in each lobe, 1cm and 2cm. Feeling super disappointed and worried. Not sure what is next, I will be going on my 6th line of treatment. I suspect my MO will recommend Halaven but I honestly don't feel up for another standard IV chemo right now. I am pretty wiped out with the anemia from Doxil and need a break. My immune system seems to be so low, which doesn't seem like a good state to successfully treat liver mets. Also, I still have a lot of neuropathy in my feet from Abraxane, my previous drug, and don't know how much more my feet can take - I don't want to compromise my ability to walk and have to be mindful of balance issues as it is. I understand Halaven causes neuropathy. For a while, I was getting too thin but have been able to "beef up" a bit after getting a blood transfusion for the anemia (my appetite returned to normal afterward, which was surprising and great).

I meet with MO on Friday and I expect he will not be giving me Doxil. Some options I am thinking about are: metronomic therapy (cyclophosphamide and possibly methotrexate or Xeloda), Verzenio, Navelbine and Halaven. I am also looking into clinical trials for HER2 "single" equivocal (meaning IHC equivocal, FISH negative rather than "dual" equivocal which is equivocal on both tests). My DH is going to call my MO tomorrow to "float" the metronomic therapy idea per my request. I would like to give my MO time to look into it and run it by some peers before my appointment. My MO may be open to it but it is not something he would suggest on his own at this point, given it is not a common therapy and also given how well I have tolerated the side effects of my previous treatments.

Any ideas on possible treatments would be welcome. As you can see from my signature block, I am in the "heavily pretreated" category at this point.

I don't know how you ladies do it. Doxil may not be working for me after an initial "Wow!" from the first infusion. My numbers doubled, putting them almost at where I started. I can see a bulge returning from an enlarged abdominal lymph node, I'm getting tired again and ... I feel like this is it. I don't want to keep trying new things and putting myself through hell to get more time.

I think what you want that time for makes a huge difference. I'm single, no kids and my in-person support network is weak. Having friends across the country and the Atlantic is nice for conversation, but makes for lousy hugs. I've been on disability for several years for non-cancer reasons and every month is a juggling act to pay bills. I paid off a payment plan today and that should feel great. Instead, I'm thinking about what else needs paying off.

I don't feel like a coward or a quitter. It hasn't even been two years since my original diagnosis. I've been through so much that I can't imagine continuing to try new drugs or treatments. And I don't know what I would gain. From Day 1, I've said it's quality not quantity that matters to me. That there's a big difference between being alive and living your life.

JFL I used Penguin..I had used them before with Taxotere with great success and then with Halaven. With Halaven I rented used caps, a suggestion from this site, it’s not advertised...you can’t tell the difference...it’s $300 a month as apposed to the $450. I also reached a level spent (because of my Taxotere treatments too) that after two months put me down to $150 a month...also not advertised. If you consider Penguin, call and discuss your options as far as cost, they are very accommodating. You do need a dedicated helper, my husband is now a pro ;-)

Lucky me...I have a few great big blisters now on my toes...ugh. This sucks.

Liwi thank you for the heads up...I have been really ‘babying’ my feet and the blisters seem to be reducing. Painful though, and annoying, especially on my little toe. I hope yours clear up and you are able to continue on with your treatment,

JFL thinking of you today and hoping you and your MO find the right plan...the Silver Bullet.

Feel well everyone.

JFL so glad you have a plan that you are happy with...this trial sounds really interesting, please keep us posted. Again, our time line is very similar, and I think I may have been through a few more IV chemos, like Halaven, Gemzarand Navelbine, I too am starting to run out of options. You are lucky to have your husband being so knowledgeable, what a bonus.

Trying to get the decorating done while my hubbby and the kids are out, but I keep losing my motivation...ugh.

Have a great weekend everyone, feel well!!

Batfax,

I know they had to be very careful about timing my Doxil dose with radiation, as the two don't play well together. However, as I was on a once a month infusion schedule, that wasn't too hard.

Tumor Flare is real, and can cause a huge spike in your TMs. It means that the test can't tell the difference between living or dead tumor cells, and that the Doxil is killing tons of cells. I get tumor flare with most new therapies, and have learned not to freak out until the second or third cycle.