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

Options
189111314

Comments

  • Teachermom2
    Teachermom2 Member Posts: 81
    edited September 2018

    Chef i just had my second doxil treatment on the 13th and I have lost a little weight since starting, which is a first for me, I always seemed to gain. My appetite hasn’t really been effected.Ugh I was actually worried it isn’t working...the length between treatments makes me fearful progresssion can creep up quickly. My mo says we will scan after three.


  • gramen
    gramen Member Posts: 179
    edited September 2018

    Hi Chef,

    Ill be having my second infusion on Thursday (I see you are having yours the same day).

    It's hard for me to tell about side effects because I was really sick when I started Doxil. I do feel the hand and feet issues, but a little milder than with my previous treatment (Xeloda), now moisturizing does give me relief and "staying cool".

    Did lose a few pounds, I feel mainly from fatigue, and a little nausea. Was so tired I would sip some soup or eat gelatine, etc. By the end of the round I'm feeling a lot better though.

    Keep us posted. I learn so much from all of you. And it helps to know I'm not alone...


  • chef47
    chef47 Member Posts: 76
    edited September 2018

    thanks teachermom and gramen:) I’m going in soon but reluctantly. If you look back you will see I’ve had this fever and sickness going on for a couple months. Well last night it knocked me back like a 747. Temp went up to 102.4, pain was unbearable and uncontrollable, weakness and nausea. I kept thinking no way can I do chemo tomorrow? How could my body handle that? Well my fever finally broke at 5 and I’m much better. Not 100% but I’m rarely 100% if ever anymore. So anyway if you could pray me thru or good vibe me thru;) whatever you do, I’m scared to do it but also scared they will say I can’t do it. I know it’s the cancer causing my sickness cuz I haven’t had any other txs besides radiation to a few ones. Thanks so much and I hope you all have a glorious day that cancer doesn’t win, YOU WIN!

  • Liwi
    Liwi Member Posts: 298
    edited September 2018

    Thinking of you Chef, hoping you can get get your treatment and that it has an immediate impact on your fever, weakness and other issues. I’m sorry to hear of all you are going through.

    I had my 2nd infusion last Thursday. Main SE is fatigue. My feet feel a little more puffy and warm but already have neuropathy that never went away after Taxol in 2015.
  • chef47
    chef47 Member Posts: 76
    edited September 2018

    hey guys! Well the night before my treatment I had a temp of 102.4 and a horrible night of pain and nausea, I seriously thought there’s no way I can do chemo like this! But I went on to appt thinking I’d see my dr before the appt so I could at least tell her and get reassurance that it would be fine. Nope no appt. the nurse didn’t stop it so we went for it. I’m glad now that we did. I had the treatment and came home and slept all evening and then stayed in bed way too long today. Actually? I feel better! I hate to say it too soon but my arm/shoulder pain is better today! I haven’t had a fever(they usually come in the evening). I have had some sweats and a headache but mostly just the same thing I’ve had all the while FATIGUE like nobody else understands!! Zometa next week. How are you guys doing???
  • gramen
    gramen Member Posts: 179
    edited September 2018

    Chef! Good to hear that so far so good! As with other chemos, stay hydrated!

    Same here, taking it easy (vegetating lol) even though I expect some side effects to hit in the next few days.

    Keep us posted!!!


  • JFL
    JFL Member Posts: 1,947
    edited September 2018

    Chef, glad you were able to have treatment and have been feeling somewhat better. How is your temperature today?

    I have had a low grade temp for over a week now, since before my last infusion 8 days ago. Not sure why. Have been trying to eat a lot of organic, grass fed red meat and other plant-based nutrients to help the anemia. Other than a bit of fatigue, weakness and shortness of breath from anemia, I feel pretty good. My hair has grown back so much. Hoping I can stay on this drug for a long time. Nice to have hair and nice to have fully functioning legs again. Abraxane neuropathy did a number on my legs and balance but most is gone now except for some pins and needles and numbness in my feet.

  • JFL
    JFL Member Posts: 1,947
    edited September 2018

    Not sure if anyone takes turmeric or curcumin but I read in Best Bird's MBC manual today it may inhibit the action of doxorubicin, the drug in Doxil. I stopped taking it as of today. I think I did know that when I was early stage and took Adriamycin but forgot since then.

  • gramen
    gramen Member Posts: 179
    edited September 2018

    JFL,

    Thank you so much for the info on tumeric. I plan to review Best birds guide since it's been a while!

  • Tennille76
    Tennille76 Member Posts: 92
    edited September 2018

    I did the same thing JFL, at least I can still take Milk Thistle.

  • chef47
    chef47 Member Posts: 76
    edited September 2018

    jfl:) well my temp has gotten up to 102.4 the past 2 nights. I have felt like absolute boiled sh$&. Taking everything under the sun for every problem and still no relief. But alas today I woke up with half the problems and pains! So I pretty much slept, th-su. One of the newer pains is my left side, it’s also better today. I wish I didn’t have so much fear with not knowing what is really causing these fevers and horrible pain that gets so much worse at some times than others. Thanks for the info on turmeric. What do know about tumor flare? Any chance my fevers are causing tumor flare? Wouldn’t that be a really good thing?

  • chef47
    chef47 Member Posts: 76
    edited September 2018

    jfl, awesome about your hair growing back! Mine had started sprouting before I even stopped taxol, hoping to keep growing on doxil, but honestly just want the desired outcome plus qol. I have anemia to, do they offer you any treatment for that? Sometimes I wonder what’s causing what ya know? Like, I’m severely constipated and when I don’t have the fever/sweats thing going on that left side pain feels like it could be something simple like that, but if you saw me during the fever dealing with side pain you’d think I need an exorcism. Lol

  • chef47
    chef47 Member Posts: 76
    edited September 2018

    hi beautiful people, do any of you know anything about the test d-dimer? Have you had extremely high levels? Of course when I google it it says doom and gloom so hoping you guys know something about it:) I go for zometa tomorrow and tomorrow will be one week since doxil, tbh I haven’t noticed a thing different. I was very ill before starting it so I actually have had improvement:) I hope it holds!

  • Liwi
    Liwi Member Posts: 298
    edited September 2018

    Chef. I am not familiar with the test-dimer. Is it something you are having done while on doxil? I’m glad you are feeling better.


    Tomorrow will be 2 weeks after my 2nd doxil. So far major SE had been fatigue even this week. Last evening at the end of a short walk I started feeling a bit of pain in 2 toes in my left foot, almost like I am getting a blister but I don’t see anything. Also I feel a bit puffy on the bottom of my feet just behind the toes and wondering if this might be a sign of the start of hand foot syndrome.

  • chef47
    chef47 Member Posts: 76
    edited September 2018

    Liwi, I had the test done during a hospital stay, they have run every blood/urine/fecal test possible to find a reason for the fevers, that test is for clots?

    Oh I hope your toe and feet pain were just that naughty voice that tries to get us to stop walking;) or doing good things for ourselves;)

  • JFL
    JFL Member Posts: 1,947
    edited September 2018

    Liwi, I had that same symptom on the bottom of my feet early on and ended up realizing it seemed to be mini blisters very deep below the skin's surface on the bottom of my feet. Although I did have a bout with extreme blistering between rounds 2-3 on the top and sides of my feet, the bottom of my feet never gave me much of a problem. I felt issues on the bottom of my feet but it wasn't bad. Again, my best advice would be to avoid any and all friction and heat on your feet 1 day before and 6 days after infusion and soak feet in ice at least nightly but possibly 2-3 times a day during that time. I haven't had any issues since round 3. I think the body adjusts and the healthy skin tissues build up a tolerance to the Doxil or the immune system learns to identify it more quickly and clear it out of the healthy skin tissues more effectively. Apparently, the cancer cells have only one way to clear Doxil while healthy tissues have 3 ways.

    Chef, I haven't heard of d-dimer although I did just google it and see it is known to be linked to DVT or PE. Do you have any pain, pressure or swelling in your arms or legs, or trouble breathing? I had DVT in my subclavian and brachial veins a year before original cancer DX, due to the cancer, and the symptom in my case was that my arm suddenly felt like someone cinched a rubberband around the top and I had a weird pressure. After a few days, I started getting little red capillary breakage spots showing up on my chest between my shoulder bone and clavical bone. My arm also looked a tinge more red I compared my forearms to each other. The most common place for DVT is the legs and may present as pain, swelling and/or pressure in a certain area. Not trying to scare you and I hope this is nothing in your case and a false alarm but you should get it checked out immediately to confirm there are no issues. I finally went to the ER after 4-5 days with a doctor's note in hand to give to the ER staff from an urgent care clinic I just visited stating that I had suspected DVT and needed to be seen immediately. The triage nurse laughed it off, smirked at me, lifted my arm up and told me I was fine and had no reason to be seen urgently. After 14 hours of waiting, I was finally seen and the doctor said my clot had almost fully occluded by the time it was found (blocked off 100% of blood flow) which would have been very bad. Also, because I waited so long, I missed the window of opportunity to do a laser ablation to remove the clot, which must be done in the early stages. It is probably nothing in your case but better safe than sorry.

  • Teachermom2
    Teachermom2 Member Posts: 81
    edited September 2018

    Hi All,

    Sooo...question. I am two weeks into my second round...which is a month and a half on this treatment...and I asked today at my blood check ‘when will we know if it’s working’ and my Onc said Doxil works slower, that we will scan after next round. Ugh. My nerves are frayed, this beast was on a rampage when Halaven stopped working, I am fearful of the amount of time we have to wait.

    Thoughts? He put in for tumor markers with this check...they are usually very accurate. But I am losing it with worry

  • gramen
    gramen Member Posts: 179
    edited September 2018

    Ugh! Teacher I'm sorry about the anxiety! I feel the same way. My last two treatments have been a fail, Halaven and Xeloda. I'm close to you, 1 week after 2nd cycle. Plan to ask onc on Monday about scan. I do feel better, less coughing (my main issue are lung Mets right now), and overall fatigue is better.

    Crossing fingers for all of us <3

  • chef47
    chef47 Member Posts: 76
    edited September 2018

    JFL, thanks for the reply:) I was in the hospital when they did the test, they were just overchecking me for everything, I didn’t and still don’t have any signs of a clot, my oxygen was low and I had inflammation of the lining of my lungs. They did do a chest X-ray and a ct scan. I went to my onc yesterday and my np was kinda shocked by the d-dimer elevation but after talking to my onc she said that it was just because I have metastatic breast cancer. That causes the elevation, it’s just not a common test for us without reason. Had my zometa yesterday and I’m actually feeling pretty good. Haven’t had a fever in about 4 days:) also they are gonna keep a closer eye on me watching out for clots;) hope you have a wondernight night!
  • kachincolor
    kachincolor Member Posts: 118
    edited September 2018

    Hi All,

    Teachermom, would your MO order a tumor blood test as well as a white count test? My MO ordered both of these tests to happen every two weeks for the first three months of treatment. Her justification for the tests were we weren't using Nuelasta and she wanted to make sure that my white counts stayed high enough and she threw in the tumor count just to ease my (and her) anxiety.

    My experience with Doxil has been very positive. In fact, it is the only drug that has worked for me. My tumor markers (which are accurate for me) started heading downwards after my first treatment.

    Chef47, Nice to meet you! I am so sorry you are having to deal with these persistent fevers. That no one can sort this out is very disconcerting I am sure. So glad you are feeling better today.

    JFL, Thank you so much for your wise and thorough discussions on these boards. And thank you for all the information and education you share with us all.

    LIwi, Nice to meet you! I too had blisters on my feet during my first three rounds. In fact, I had so many different rashes over the first six months I felt a little nutsy-cuckoo. I had terrible, terrible hand foot syndrome with Xeloda so I was pretty prepared for hand-foot syndrome with this drug. Honestly, as JFL suggest, keeping your feet cool, and minimal pressure on your feet will help. I ice my feet while watching tv at night. I walk 4 miles each day and immediately ice my feet after my walks. I avoid my favorite foot massages and use Aquaphor with socks each night.

    Gramen, Glad to hear that your coughing is less and you are feeling more energy. Fatigue is defintely the worst side effect I have one this drug. Crazy how, for me, the first two days after the infusion I am great even though I don't take anything but Kytrile with my "Koolaid" but gosh by day four I am really struggling. I get two walks in on days three through six but I am pretty wiped out until day 10 of the cycle.

    I have enjoyed two lovely trips in the last six weeks: I spent a week in Telluride enjoying the film festival. The high altitude was a bit of a challenge. I used an oxygen bar every day which was soothing and refreshing and managed to get my walks in each days despite lots of movie watching and altitude over 8500k. This past week my cute hubby and I did a truck camping trip around Lake Superior. While our weather was blustery and the trees didn't have much color we managed hike to six different waterfalls and lighthouses. I had never been to the Uppper Pennisula of MIchigan and it was gorgeous. I keep trying to enjoy the days that are pain free and where I can enjoy the health I have left.

    Today am blue with the news of Patty's death (here on BCO) as well as the loss of another friend here in MN.

    Am preparing myself for the Pinktober onslaught.

    Warm blessings to you all!

    Kimberlyimage

  • gramen
    gramen Member Posts: 179
    edited October 2018

    Kachincolor/Kimberly, that's a great photo! And so glad to hear that Doxil allowed you to enjoy the summer. I hope we can all have a "break" and enjoy the upcoming holidays.

    So sad to hear about our dear Patty :-(

  • gramen
    gramen Member Posts: 179
    edited October 2018

    Has anyone experienced elevated platelets while on Doxil?

    Mine are at 600!!! Will be asking my onc today, since nobody has said anything to me during g appts...


  • kachincolor
    kachincolor Member Posts: 118
    edited October 2018

    Gramen,

    I don't know anything about raised platelets. Sending you love and peace as you wait to hear from your MO in order to understand what is going on.

    Spent the entire day in the ER today. Sigh. Turns out all is well but it took from 10:00am to 4:00pm to get several scans, ultrasounds, etc. Chest pain has not really relented and am getting bizarre visual problems as well as a weird pinging and swelling in my left leg (the leg that I had a revised hip replacement).

    Still trying to get over overwhelming fatigue after our latest trip. Chemo again on Thursday so I am hoping for stable tumor markers and some discussion about how to handle these weirdo symptoms that don't apparently mean anything!

    Hope everyone is doing well.

    Warm blessings,

    Kimberly

  • gramen
    gramen Member Posts: 179
    edited October 2018

    Ugh! Hope you feel better soon Kimberly!!!

    Today has been rough around here too. Saw my onc, platelets are back to normal. He sent me for a thoracentesis, been getting plueral effusions drained since May...

    But gosh. This time instead of relief I'm in so much pain! A different person did the procedure, I feel they left the vacuum in too long ...

    Anyway, took some pain meds, and if not better by tomorrow,will be heading to the ER too...ugh!

  • kachincolor
    kachincolor Member Posts: 118
    edited October 2018

    Oh Gosh Gramen,

    No idea that you were getting thoracentesis! Ugh. So sorry to hear that you are in so much pain and uncomfortable. I really hate when there is a change of staff when doing these tricky procedures. I don't have a port (know I should get one....but kept hoping that the oral stuff would work and since I was bombing out on drugs didn't see the point to getting a port at the beginning of Doxil cause none of us, MOs included thought it would last longer than 5 months!). Anyway, last infusion was done by someone new and over confident. I told her the IV hurt in an unusual way which she ignored. I ended up with Doxil infusing into my arm. Ouchie! Not sure how long the burn appearance will last but my arm has been sunburn red since last month. Fortunately, doesn't hurt!

    Just want you to know that I thinking about you and hoping that tomorrow brings pain relief and the pleasure of a day in your own happy space and not negotiating the tricks and trades of the ER.

    With hope you have a good night sleep.

    Warm blessings,

    Kimberly

  • Liwi
    Liwi Member Posts: 298
    edited October 2018

    Kimberly I am amazed at your 4 mile daily walks. I’ve been nervous about walking much after I started with the blistering. Actually at this point my hands are in worse shape than my feet. I think I didn’t ice them as much as the hands. For this email who have had this, how long does it last?

    I hope you and Gramen feel better soon.


  • kachincolor
    kachincolor Member Posts: 118
    edited October 2018

    Hi LIwi,

    Thank you for your well wishes. Nice to meet you!

    The hands and feet can be tough. I take 100mgs of vitamin B6 which I discovered while taking Xeloda and I think this supplement is helping me. At the beginning of my treatment I found that my feet got really hot really fast. Small blisters that would settle down. Honestly, I put Aquaphor ointment on my hands and feet and where cotton socks and gloves most nights. Staying cool is really important too. My feet are really hot after my walks, but I ice my feet with these ice socks that I bought on Amazon. The socks are called "Natra-Cure"

    With regards to your hands, I found that cooking really aggravated my hands. Chopping with knives, stirring with wooden or mental spoons, etc, was really hard. I try and do prep once a week then ice my hands and really focus on keeping the pressure off my palms.

    I am on my 15th cycle this week (hopefully if the tumor markers indicate stability). I found the first three months the toughest in terms of rashes and hand/foot syndrome. I hope you can out-run these side effects.

    Sending you love and hope,

    Kimberly

  • kachincolor
    kachincolor Member Posts: 118
    edited October 2018

    Hi All,

    Well, no 16th cycle of Doxil for me tomorrow. Tumor markers are up and, more importantly liver enzymes are all out of normal ranges in the span of one month. My current MO is looking at Navelbine and my Boston MO is favoring Halaven. I am trying to figure out the best choice....

    Sigh. PET scan and brain MRI getting scheduled. I knew this might coming but I am still bummed leaving the only drug that has worked for me since I was diagnosed with Stage 1 :(.

    Any suggestions welcomed!

    Kimberly

  • gramen
    gramen Member Posts: 179
    edited October 2018

    Ugh!!!!! I'm sorry Kachincolor/Kimberly.

    Please know, you sharing your success with Doxil gives a lot of us hope <3

    I was on Navelbine when first diagnosed as metastatic (liver tumors), along with Herceptin and Perjeta. I remember a weird rash on my face

    (like acne, but not inflamated, more like whiteheads lol). Also, upset stomach every now and then, but I remember one time I got sick eating pizza, so is not like I was been careful. Overall, had a very normal, good quality 8 months, worked full time, traveled, camped, etc.

    I had Halaven more recently, April and only had 2 infusions. My lungs/symptoms keep getting worse and my Dr took me off. I don't remember any side effects, other than low blood counts but not soo low, just took extra precautions when traveling, etc. Another Dr said maybe I wasn't on it long enough and that I was took off prematurely. I don't know. I try no to linger on these things and just look forward.

    Good news, I keep my hair with both of them. Let's us know if you have any questions, and what you end up going with.

    PS: you go to Dana Farber in Boston? I do every now and then for consultations, planning to go in a couple weeks.


  • kachincolor
    kachincolor Member Posts: 118
    edited October 2018

    Gramen,

    Thank you so much for your response and for sharing your experience with these two drugs. I do go to Dana Farber on a quarterly basis. Love my MO there.

    Having the first drug that worked for me (diagnosed stage 4 within a year of finishing chemo) fail is a bit frightening. I hope we can come up with a plan soon! MRI and PET scans are on Friday morning so will check back in when I have the results.

    Again, thank you so much for responding so quickly!

    Warm blessings,

    Kimberl

Categories