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

Kimberly, I am sorry to hear you need to move on from Doxil. You have two great options with Navelbine and Halaven. I have heard both have very tolerable, minimal side effect profiles and can be very effective. Halaven would probably be the more commonly picked first choice of doctors as Navelbine is an older drug, but Navelbine has benefits too (no hair loss, for one) and I have that one on my short list - actually, I have both of those on my short list. Is Navelbine IV or do they have it available in pill form in the US? I know it is available in pill form somewhere but not sure that is here in US.

LIwi, JFL and Tennille76,

Thank you so much for your responses. MRI and PET scans tomorrow so we will find out where the progression is—which will be helpful although a bit disconcerting tonight. Thankfully scanning machines don’t stress me out.

Liwi, I certainly found the first three months the toughest with the hand/foot syndrome and the rashes. I pray that the icing and Aquaphor ointment helps also. I might not have suggested this, but when I was on Xeloda my MO suggested 100mgs of vitamin B6 to help with hand/foot syndrome. You might look it up to see what you think. Again, I pray that your neuropathy is not further aggravated by the Doxil.

JFL, I did find Navelbine listed as an oral drug (wouldn’t that be nice) and I found it listed in various dosages; but, I can’t find anyone who knows about it. Will certainly ask this question of both my MN MO and my Dana Farber MO. Thank you for your perspective.

Tennille76, I must have missed why you only got one dose of Doxil but I hope that GemCarbo works wonders for you!

Warm blessings,

Kimberly

Well Ladies, The scan are back and the news is pretty devastating. I am kind of at a loss as to what to do really.

PET scan showed very very modest progression. So the Doxil continues to work pretty well in my body. There was really no change in my livers so that was perplexing to my MO. She has ordered an Liver MRI next.

Horrifically, the brain MRI revealed no less than 50 small tumors in my brain. My RO was very impressed by his ability to to count them all. They are all over my brain. My MO and RO immediately recommended whole brain radiation starting TODAY!! They are quite shocked that I have had no symptoms especially with some swelling of the brain. So after a 7:00am MRI of the brain and an 9:15 PET scan, I was in consult and getting fitted for a radiation mask. My first treatment was at 4:00pm today. I am scheduled to get another one tomorrow.

This just seems so sudden and this is an area (brain mets) isn’t one I have focused on at all! I am shocked that we went along without getting an additional consultation but with 50 both doctors thought that this was my only option....

I am down and scared of course. Just not sure if this is the right step and/or what to expect with brain mets.

Warm blessings,

Kimberly

JFL,

Thank you so much. I didn’t know there was a brain mets page — but I have struggled with shyness posting and so I haven’t really explore this community to the fullest. So many of the women here seem so well educated! It was totally freaky today to get a PET scan, and brain MRI (since it had been over a year) only to find out the Doxil is managing my body but my brain is out of control. 50 little mets! Had the mask made at 1:00 and was getting radiation at 4:00pm. I will go look to Brain Mets page to get info and support an will stay here, at least for now, on the Doxil thread. Thank you again.

Warm blessings,

Kimberly

Chef47,

Thank you for your words of support. They are very much appreciated!

Regarding your chest pain — I am writing 6 hours after you posted so I am presuming you have found a resolution. But I also experienced chest pain the first few months on this drug. But it was in the center of my chest and really more associated with heart-burn than my heart. Definitely no problems breathing.

However, IF you are at risk for blood clots I hope you called the on-call MO and consulted with him/her. I think it is always best to ask the doctor first. Just my predisposition. Praying that your are comfortable and pain free and that your worries are resolved.

Warm blessings,

Kimberly

Hi. I hope you don't mind if I join you. If all goes as planned, I'll be starting Doxil on Tuesday. Right now, I'm still in hospice. I sign severance paperwork tomorrow. Last April, before I finished rads, a PET scan found mets to the liver. I was given 6 months or less to live. My then MO said Halaven (sp?) might give me an additional 3 or 4 months of time. I value quality of life over anything else and saw no sense in doing chemo to gain so little when I wanted to fully live what time I had remaining.

After my body recovered from rads, little seemed different. And it has stayed that way. I have chronic pain from degenerative spine and joint issues, fibromyalgia and chronic migraines. Pain is normal to me. Yet suddenly everyone was a cancer expert, telling me I have so much cancer pain, so much from mets, etc. I do have swollen lymph nodes near my liver that hurt and sometimes make my waist area so incredibly sensitive that even a sheet draped across that area is unbearable. That's been it for cancer-related pain.

I entered in-home hospice in June. The node pain and swelling was assumed to be fluid buildup from a damaged liver. Two ultrasounds found no fluid. A CT scan didn't either. The CT scan showed that my liver tumors are growing, but that there's no new tumors. My other organs looked healthy. Being triple negative, I expected to be chock full of new tumors by then. And how could everything else look normal? Blood work was normal for me and a liver function panel showed normal levels.

My "expiration date" is next week. This made no sense.

My hospice NP encouraged me to ask questions and see if there were answers; to leave hospice if that was best for me. An incredible MO I consulted with last January had voluntarily followed my case through the Stage 4 diagnosis. I contacted him about a month ago. We talked. He'd already reviewed my new records without even being asked. Suddenly, 6 months to live was ... hogwash and there were multiple options that could give me meaningful amounts of time. If I commute 3 1/2 hours each way for treatment. Okay!

Unfortunately, all the local MOs belong to the same oncology group throughout several counties. That group offers no financial assistance. I'm on disability and Medicare, putting chemo out of reach without help. I do wonder if that's why I was given no real options last April. I'll never know and what matters is that I'm moving forward now. My new MO's at the University of Michigan and it does help patients. I could see my next birthday - Something I never imagined was possible.

This doesn't seem real. I don't know what I should do to prepare for my first infusion or what to expect. I took Xeloda for 6 months while Stage 3, so I do know a lot about HFS. (I'd recommend Udderly Smooth 20 Urea over Aquaphor).

But?

My mind is still reeling from this drastic change in my reality. Can anyone recommend anything for the infusion or all that stuff that's good to know?

Thanks!

Kimberly, have you been regularly getting brain MRIs as part of your scans or did you just happen to have a brain scan this round? It seems like the protocol for if and when to do brain MRIs is all over the board. I have never had one but sometimes wonder whether I should.

Feline, welcome to this group. Sounds like you may have 9 lives Must be sort of surreal to be signing yourself out of hospice after I am sure you have already prepared mentally for the opposite. Life can take interesting turns sometimes. Amazing your liver mets have remained as stable as they have with no treatment. I have been living with very heavy load of liver mets for nearly 4 years now, with a pretty great quality of life that whole time despite various chemos and other treatments. I suspect Doxil is going to work very well for you. The biggest side effect seems to be rashes and hand feet issues. Avoid friction on your hands, feet and any other part of your body the day prior and 5-6 days after infusion. Avoid tight clothes, seams or anything rubbing or poking into your skin during that time. Use cold water for hand washing, dishes, etc. Keep showers short and on the cooler side if possible. Try to minimize opportunities for your body, especially hands and feet, to sweat during that time period. Soak hands and feet in ice water at least once a day during this time period as well, if not two or three times. If you can do it, any bit of icing your hands and feet during infusion can help, even if you only ice for 5-10 minutes or any small amount you can handle. I ask the chemo nurse for a bowl of ice water in those large plastic hospital vomit bowls they have and intermittently soak my hands and feet in ice water throughout as comfortable - no suffering needed to get results. Good luck and keep us posted on how everything is going.

Teachermom, have you heard anything back about your scan yet?

I hope everyone is hanging in there. I just had my 7th round of Doxil. It has been 6 months so I am due for a 3-month PET scan. Feeling nervous about that. Despite eating a lot of red meat since last cycle, my hemoglobin remains low and is a hair lower than last time (9.3 versus 9.8 last time). I am really not interested in a blood transfusion so praying I can keep it at 9.0 or above. I think they recommend transfusions when it falls below 9.0. However, my WBC was higher this time which is good. Liver enzymes and alkaline phosphatase remain a bit high, which I am *hoping* is from Doxil and/or Y90, both of which can cause these elevations.

FelineMum,

Slowing down the infusion should help. Do you receive Benadryl during infusion? Usually, one will receive Benadryl and steroids to prevent allergic reaction. Over time, you may be able to remove those. I had the same issue of losing my fingerprints on Xeloda. I had to sign my son in and out of daycare on prints and it was so awful that it never worked. Also, finger ID in iPhone was an issue. The daycare assumed it was a technical glitch. Mine look like they are partially but not completely erased out now. I haven’t thought about it because I no longer take my son to the daycare with a fingerprint ID system and have the new iPhone with facial recognition. The HFS on Doxil is a bit different. The Doxil HFS is like a sunburn from the inside out, from very deep inside. More fiery feeling than the general skin sensitivy and rawness from Xeloda. However, whereas Xeloda continues to worsen over time, the worst of Doxil is usually around cycles 2-3 and then it improves. One’s skin learns how to protect against it - as if it is building up a suntan. My HFS would usually show up somewhere between around days 6-15 in the cycle and improve before the next cycle starts. However, before this, my hands would be a bit red, swollen and sensitive the first few days after infusion. I had a severe case of HFS cycles 2-3 but no major problems after that. It is relatively mild now after 2 dose reductions and 6 months. I wouldn’t worry about ice water if it doesn’t sound good right now as you will likely get to a point where it sounds welcoming to calm the fire hands and feet. At its worst, ice water is the only thing that helps me and really helps a lot at prevention and soothing the existing burns. I usually can’t keep my hands and feet in for long but a 60 second dip repeated 5 or so times does wonders. If the water is too cold, I will put less ice. Even cold water alone helps with no ice. A little goes a long way.

Teachermom, glad you liver is responding although must be frustrating the bones may not be. It is hard to give up a medication that is working on the liver but I don't know what a doctor would usually do in that situation. Good sign your MO is looking into this further and conferring with the IR before making a quick decision. To date, it has always been stable bones and a progressing liver for me but all of that can switch around on different medications. Although no one wants progression, I would rather have bone progression than liver progression. Could radiation be an option to the bone mets?

Hi All,

Treatment yesterday went fine and thankfully last two had little to no side effects...I did get a slight rash, but not too bad. Just hoping I am as lucky this time.

I hope everyone is well and enjoying this beautiful fall weather...well we are in New York

My feet have gotten pretty bad over past few weeks. I think it may be starting to ease off in this 3rd week after my 3rd treatment. Tomorrow I’m getting a PET scan and hope it shows the Doxil is working.

Felinemm that’s good that you are already getting signs that Doxil it’s working for you.

Sunset, sounds like a good plan! I recommend continuing to do preventative icing at home for the 5-6 days after infusion. Your feet should be okay on your trip. If you have access to it, you can ice on your trip if your feet are giving you any trouble. On some trips, I fill the ice bucket at the hotel and ice after walking on my feet all day. Have a great time in Australia!

Has anyone had to get a blood transfusion on Doxil due to low hemoglobin/moderate-severe anemia? My blood counts look good - white blood cells are in normal range but hemoglobin is slowly chipping lower and lower. I know I would probably feel better immediately but am hesitant to get one.