Caelyx & mouth sore side and other side effects

amycamyc
edited October 2020 in Treatment
Hi I've had a recurrence and will be going for a treatment of Carboplatin and Caelyx on Monday.  When I was first diagnosed with stage 3, I had 6 rounds of carboplatin and taxol. Does anyone have any experience with caelyx?  I am wondering what I can expect and if you have any advice form me.  

Comments

  • HI Amy, I had Caelyx + Carbo last winter, 3 years after initial Carbo/Taxol. Once a month treatment was not bad, I did not feel well usually on day 3-4-5, when the Dex had worn off and I had to use anti nausea meds.
    Never had any hand or foot problems, you hear about so much. My hair did not fall out, but did not grow any new either so became a bit thin, all is back now. Overall not a bad treatment, especially if it works for you.
  • Thanks for your comments @goodday.  I have had the same thing with my hair.  Good to know it will grow back the chemo has shrunk the masses a bit. I seem to get more fatigued each time and I get a fiery red rash on my hands. Being proactive with ice and lotion helps. I think I've have 9 rounds and might have a 10th on Thursday.  How did it work for you?

  • Hi Amyc.......I had a serve reaction to this drug....literally burned my skin under my arms and down my sides.....this is not typical though.........everyone is different
  • FlowergirlFlowergirl ✭✭✭
    Hello chat participants... I'm looking for some recent experience for those that have been treated with 
    Doxorubicin pegylated liposomal - or Caelyx.... many of our posts on this treatment are dated and hoping to refresh some of the topics.
  • Other than the notes regarding hand and feet redness or skin peeling, and possible mouth sores, I am curious about other post chemo side effects anyone can share (as in, how bad was nausea for you?)
  • edited August 2020
    Asking for a friend who's just started a Caelyx /Avastin series.  She's developed mouth sores and sensitivity so bad she can only tolerate cold milk, puddings, and popsicles. Her throat hurts such that she can barely swallow right now. Even yoghurt burns the roof of her mouth terribly.  They've prescribed a medicated mouthwash but she says it only seems to numb her mouth and throat but doesn't seem to offer any healing power.  This is only Day 2 after her first infusion so she's hoping that the side effect will dissipate quickly.   They've suggested the culprit is likely the Caelyx and not the Avastin. But wondering if anyone else has experienced the same and if anyone has anything they can recommend, other than grin and bear it right now.  @Shortone I recall you had had something similar.  How is for you now? Anything you can recommend for her? @Flowergirl wondering if you were able to acquire any more info on the subject, other than what is in this discussion thread. 
  • Hello @Fearless.. sorry to hear about her difficult time with these side effects... the only other recommendation I have hear of was a mixture of baking soda and club soda to sooth, if that is even an option for her
  • Hi @Flowergirl.  So nice to see you back on the site.  I do hope you're feeling better.  I'm just "recovering" from a failed attempt at surgery and figured, after a week, I'd be feeling better but my abdomen is so sore still. I fear how I'll be when they go back to do the job next time!  This is just from poking around.  Anyway, thank you for the suggestion. I will let her know. She's having her second Caelyx Avastin today after a two week vacation from it. It took that long for the mouth sores to heal and hoping this time a far less serious side effect if any. We'll see I guess.  

     I feel fall in the air and renewed hope for all of us......
  • FYI, my friend on the Caelyx/Avastin cocktail tells me they added Dex and Reactine to help manage side effects and this time no mouth sores. Just a mild face flush.  She also suspects they may have lowered her dose of the chemo but she'll be asking before her next infusion in a weeks' time.  So she's a happy camper this week and thought others struggling with Caelyx might benefit from hearing about the effect of the Dex and Reactine on the serious reaction she had.  MIght also be the body just adjusting too of course.
  • For anyone on Caelyx, or any other chemo that is causing mouth sores/sensitivity, two toothpaste recommendations I've just heard of.  MI toothpaste.  You have to get through your dentist. The other is a holistic DYI, mixing equal parts baking soda with coconut oil (not the cooking stuff, the one that comes in the jar and is knd of coagulated).  Mix together in a jar and let coagulate. Keeps up to a month.  
  • A new recommendation for those with mouth sores.  My friend on Caelyx who suffers badly from them each treatment...on the roof of her mouth , sides, her tongue...and makes eating and drinking a nightmare just found a gel that she dabs on the sore and in minutes it hardens and keeps the sore from stinging.  She calls it her miracle. Zilactin-B gel is the name.  If you're interested though, do check with your medical team to make sure it's use is suitable for you.  
  • I start Caelyx next week.  This is my first recurrence.  Last chemo was June 2020.   Any advice going in?
  • @tdubs17 will ask my friend what she might recommend. She's been on it few months now and in fact we were side by side in the chemo room this afternoon...that was totally awesome.  Stay tuned and hopefully there may be others in the group who can share some relevant experience on the topic. 
  • @tdubs17 Here is a direct cut and paste of an email to me from my fellow survivor JL on the subject of her more recent experiences with Caelyx.  It may sound a bit daunting so to add some context, she already has a predilection to skin and dermal issues so her rashes were somewhat expected.  Everything she does or takes is either prescribed or vetted by her oncologist as appropriate. Finally and most importantly we're of the understanding that the efficacy of Caelyx and Avastin are slower to be evidenced so patience is needed.  Her first scan, compared to scans following treatment with other chemo drugs, was disappointing and might have led one to believe the treatment was having no effect but two months later and as recent as last week, her latest scan shows everything fully stable and a very very signficant drop in her CA125.  Other that that preface by me, here are her own words of support to you and any others:

    "As to my treatment with Caelyx (& Avastin), I have found the side effects generally get better after the first couple of cycles. Personally, Day 1 & 2 have presented with a face rash which anti-inflammatories help.  I take Dexamethozone oral prescription for 3 days following chemo. I also add a 1/2 Reactine (Centirizine) as needed if the rash gets redder & hotter.  Ice gel packs are soothing too. Usually, by Day 3/4 the face rash resolves & my energy is coming back. Sometimes a lower back pain kicks in after sitting but my doctor believes it to be from the Avastin. I can deal with these pesky  discomforts. 
     
    Over this period of 3/4 post chemo days my tummy is off but I can still eat small amounts of softer foods which helps actually.  Taking Metonia a half hour before eating does work if this queasy feeling persists.  I did a few times just to get rid of that yucky feeling.  My voice is sometimes hoarse even now but it usually goes away. Gargling after brushing with a tsp. of baking soda in a cup of warm water helps to clean mouth & keep mouth cankers at bay.  I leave a glass ready in bathroom to gargle & rinse every time I’m in the bathroom.  This one is manageable now. 

    The roof of my mouth didn’t get sore until the second round. A couple of cankers were rather painful.  I finally hit on an over the counter med called ZILACTON-B after trying the prescribed Magic Mouthwash & other oral gel type treatments.  It was the best for encapsulating a canker so you could  try eating & stayed on for a couple of hours.  I tried several tooth pastes as most sting & I finally hit on one the dentist gave me CLINPRO 5000. I use a small amount with lots of cool water still to this day even though I haven’t had a sore for the last three cycles. Definitely spicy or minty flavours enflame my mouth so I stay clear of them.  Crusty foods can irritate as well.  My taste buds have continued to be somewhat off but have started to come back lately.  Good one!

    I had been warned about a midriff rash under your breasts & sure enough I had a pimply rash come & go during cycle 4.  I used a ton of creams, mostly Glaxol Base but eventually found Penaten cream for diaper rash worked well.  This rash has not come back but a few spots sometimes appear & I put on Penaten & they go away!  Very happy about that. 

    Keep your hands & feet slathered in a good lotion several times a day.bI have tubes & pots on every table. Vaseline covered by cotton socks every few nights helps my dry feet.  Shower, bathe & wash in cool water. Heat brings chemo to surface of skin.  My hands feel a little tight in the morning & somewhat numb so it is probably a little neuropathy.  Cold relieves this hand side effect so I grasp onto a cold jar or can for a few minutes in the morning.  Problem solved.  

    When I read this over I hope I haven’t over whelmed you. This is my experience & I wouldn’t change my treatment.   What I’ve learned this time is be proactive & don’t wait for a side effect.  I should add my oncologist has reduced my dose of Caelyx slightly to help with any of these side effects.  

    So to finish off .... gargle throughout the day,  have over the counter meds ready, use plenty of body cream, take prescribed meds to get over a hump,  get fresh air when you can, persevere & you can manage OK.   It may take a few cycles & then again I hope you might have no side effects.  

    PS. I’ve been having CT scans every 6-7 weeks & a heart ECCO about every 2 months which is recommended for Caelyx patients.  I forgot to mention I was prescribed 25 mg of Vitamin B 6    six times a day since my first chemo.  Two in morning, at  noon & at night.   For hand & foot skin  issues.   Seems to be helping. 
  • Thank you so much for all of this information.  Today is blood test day...treatment to start Tuesday next week.  I found Dexo...helped with naseua but really wrecked my sugars and had fast heart beat.   Im also very bloated again, its been hard to breathe and eat for the last month or so.  Didn't get drained this time tho.  Hoping the chemo will take care of this again.  I will try gargling and eat soft foods and keep hydrated skin etc.  Keeping in mind that it doesn't look like its working at first is good to know as I jump to worst conclusions all the time.  Ive heard this chemo doesn't drop your cell count?  Anyway I have many questions to ask the doctor today if she's available.  Again thank you.  Your info has been awesome!   Terri
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