Hi ladies. I am a walking miracle & I hope this gives some hope to some of you who need it. 🌷 I actually need more hope, myself. I was first diagnosed in 2006 w/epithelial ovarian cancer after removal of my ovary. In April 2006,I was staged @ 2B & had complete hysterectomy. Bc they cldnt find any more cancer when I had the hysterectomy, my dr slowed me to delay start of treatment until Aug 2006. I then had 6 rounds of Carbo/Taxol & had a 9 yr remission! My dr & I thought I was cured! Then, in 2014, the nasty disease reappeared in several abdominal lymph nodes. Six rounds ifCarbo/Doxil took care of it for 2 more yrs. It came back in late 2016 so I tried a clinical trial later in 2017,w/Olaparib combined w/another targeted drug (both of them pills) & I cldn't tolerate the side effects so I dropped out of the trial. I ended up switching drs, @ that pt, so there was some delay in further treatment. I picked back up w/Carbo/Taxol again Jan-April 2018. That brought me into remission again, but for only 5 mos. It showed up again in Sept of last yr. In Nov, I started Doxil/Avastin. Although I get stomachaches, off & on, I am miserable from all the inflammation to my upper mucous membranes (sinuses, nasal passages, eyes, ears, mouth sores), constant nasal & sinus congestion & drainage, burning 🔥& watering eyes, blood on tissue every time I blow my nose, even though my platelets are OK. I also have neuropathy in hand & feet from previous Carbo or Taxol that had worsened while in Doxil. Now I'm starting to have soreness & burny feeling on my palms 🤲 & bottoms of feet. My body just feels like one big ball of burning inflammation! My white & red count also go way down after each Doxil infusion so that most of the time ⌚ I have to stay isolated @ home 🏡 & can't go out to do things or have a normal life bc I risk infection. The fatigue is pretty overwhelming also. Since I've had so much chemo in past years, mostly since 2014, it gets harder each time &, a lot of the time, I get tired of being brave & fighting. I want to live but I'm so tired of feeling sick & miserable & isolated from normal living. Can anyone identify w/my side effects or feelings? How have you dealt w/them. (PS. I also got the Doxil rash on my stomach & legs, that are tiny reddish dots, but thankfully they don't hurt or itch. They just look weird.) 😜
Doxil/Avastin for 3rd Recurrence: Hi ladies. I am... - My Ovacome
Doxil/Avastin for 3rd Recurrence
So sorry you are having a hard time right now. I can only speak for the Avastin with the nasal issues. I would recommend you ask for a cream nasosept for your nose and also use the Neil Med rinses to clean out the mucus. I know my bum was also sore so I used liquid paraffin to soothe it. I have no experience of doxil. I would recommend you get comfy shoes and slippers. Use acqueous cream for dryness but otherwise contact your team and see if they will come up with some solution for you. I was also diagnosed 2006 but recurred earlier than you. I have had a few chemos and also radiotherapy for small recurrences. At the moment its wait and watch for me
Hi, Suzuki. Thank you for your helpful reply. I will ask my dr abt the nasal meds & what is an aqueous cream? Do u have any experience w/hand & foot syndrome? I'm glad that you are in remission now. May it be a long one! 💛
Since you mentioned that you identified w/the nasal issue w/Avastin, what was your experience w/that?
Thsnks for your help.
KYgrl
Oh honey,
You are in a miserable place right now.
I think the Avastin can wreck havoc in your mucus membranes and also can cause some serious aches and pains sand other extreme side effects.
With the Doxil, I started taking antihistamines, because I get itchy rashes, but otherwise, I just get knocked low the first week and recover by the middle of the second week.
If I were you, I would ask for a full blood assay in your second week, and if your white counts are down, you should be prescribed an injection that will sort that out (Neulasta?).
Perhaps you should give up on Avastin altogether.
I am on Carboplatin and Caelyx, and although I have more neuropathy in my feet, I do not have anything in my hands, and neither do I have all the side effects I had when I was on Taxol and Carbo and I have all my lush new curly hair!
I have heard that when Carbo is combined with Caelyx, both chemo drugs have less extreme side effects.
I have one more thing to add.
When the trials of Olaparib were begun, they did know know what dosage was adequate and the often put people on too high a dose.
When they reduced the dosage, they found that the side effects lessened but the effacacy was the same.
So, perhaps you can try going on Carbo/ Caelyx and dropping Avadtin.
Then having another go at a lowered dosage of a PARP inhibitor like Olaparib.
I hope this helps.
Hugs,
Laura
Thank you, Laura. You are the second person to link nasal issues w/Avastin. It didn't occur to me that Avastin wld be the cause bc I was told it's not really a chemo & it mostly just attacks the cancer-created blood vessels that enable the cancer cells to get nourishment. When I complained to my dr abt all the sinus & nasal discomfort & congestion, her answer was that Doxil attacks all the mucous membranes heavily so that was probably causing it. She said to use saline nasal sprsy frequently. I do that but w/only minimal relief. I also keep a large pot simmering on the stove all day (for humidity) & every time I go into the kitchen, I bend down & breathe in the steam.
Because of the very painful mouth sores that I have gotten both months, so far (that only start clearing up a few days b4 the next chemo), & also the worsening neuropathy & developing hand 🖐️ foot syndrome, I got my dr to delay my next chemo by an extra wk & also to decrease the dosage of Doxil by 25%. Now, after hearing more abt the connection btw Avastin & mucous membrane issues, I am going to ask her if we cld skip the next Avastin & just get the Doxil so we can determine what is causing what.
Thank you, again, for your help.
KYgrl
I’m so sorry to hear how you are feeling. I don’t feel qualified to reply really as I’m only a third way through my first chemo carbo/taxol but was getting all the bloody nose and itchy rashes. I’m having to inject filgrastim each day to increase white cells which may help you too. Admitting your genuine feelings to a therapist or writing them down can allow them to pass otherwise they can get stuck inside. It’s not unhealthy to feel like this. I certainly go from hopeful to not wanting to continue when I feel physically so poorly. I go hope you soon feel better and more relaxed
Love
Alex x
I just want to give you a hug......so cruel after nine years remission. I hope something good happens for you soon. Much love. x
My dearest friend - I so relate to this. Am not sure what to say to make you feel better but a little tip I picked up from when I was on the Caelyx ( or doxil as some say...) was to invest in Moogoo milk a moisturizer that was originally meant for cows udders but refined for humans as a lovely moisturizer ... it is something that I suggested to an older lady who had to stop her treatment because of her hands and feet rashes etc. it actually works and she was able to continue with treatment. I was weeping lst night saying almost exactly what you were saying as I feel ‘ o. Fire’ with inflammation and am sick of this as this chemo ( cisplatin. / gemzar) will be 5th attempt. I know we don’t want to give up but it just makes us so weary and miserable doesn’t it? I am about to go and see a clinical trials team... but seriously how many side effects and pokes and prods does this mean if I get accepted? So yes - I totally hear you. And yet somehow after a warm bath a meditation. Some more pain killers (!) and a new day - we get up and face the day. I so hope you have a loved one helping you to get back up? I am with you and I am here along with others to cheer you on....
Wow! You are my soul sister! You get it! That means so much! 💛 As far as "a loved one" to help me. My only family 👪 (2 sisters) live 3 states away in MO & only one of them have come to visit & that was just for a wknd, over a yr ago. They call me frequently. My best girlfriends are so busy w/their own lives & families & health issues that they rarely visit. One of them lives 7 min away (but she & her husband each have developed serious health conditions) & the other one lives in a neighboring town (45 min one way) & works full time. My friends from church (where I have gone for 8 yrs) turned out to be just for when I'm @ church. I'm living in a 2BR apt w/my ex-fiance. Weird situation! We were apart for 2 yrs, got back together last March, got engaged in May & moved into the apt together in July (w/plans to get married this spring). As soon as we moved into the apt, we started fighting bitterly. We had both been living by ourselves for a number of years & were not prepared for merging our 2 households into one. He didn't know how to handle the stress & regularly yelled @ me, verbally attacking me & saying awful things! I wanted to get a far away from him as I cld but I was on disability & cldn't afford to live by myself. Additionally, my name was also on the lease & it wld cost me $800 in fees to break the lease. It didn't matter what I did or said, the arguments & verbal abuse continued. Then, he ignored me (sleeping in the other BR & pretty much staying in there all the time). July through mid-Nov was a living hell & I felt so alone & hurt. We had called off the engagement during a bad fight in Aug but were both stuck in the same apt for 6-9 more mos! Sometime in Nov, we figured out how to live together peacefully, which eventually turned into living w/kindness, implementing the "live & let live" attitude. We aren't reestablishing the engagement but our relationship has morphed into a kind & mutually caring friendship. He takes me to most of my dr appts & infusions, calls me from work mid-morning to check on me, takes care of the cat litter box & feeds her breakfast & morning meds, shops for groceries, & sits in the LR w/me for abt an hour most nites. But we both know we are "moving on" w/our lives b4, or when, the lease is up in early July so I will be alone again.
I only have one child (29 yrs) who is bipolar & in rehab for the 3rd time & doesn't drive) so not much help from children. We love each other but she has so much trouble w/her own life that she doesn't have the ability to help me.
Wow, sorry for this long post. You just touched a place in me that made me want to confide. God bless you for caring. Thank you! 💝 KYgrl
I can't even imagine what it must be like to have the stupid cancer recur after such a long time! It must have been devastating. I am only on a second recurrence (and that after only 8 months, but I was stage IV inoperable to begin with). So here's a question for you: is acupuncture a thing in the UK (I'm in the US). I have an awesome acupuncturist who got rid of all the symptoms from long time Avastin use (except the drippy nose which is still there). But I'm a big believer. I had geographic tongue, joint pain, fatigue, swollen ankles and hands, neuropathy, you name it. The acupuncture relieved 90% of all these symptoms. Worth looking into!
Thank you, Danielle. I'm not in the UK. I'm in the US in KY. I have heard from other people, also, including my palliative dr, that acupuncture has helped a lot of people. The challenge is that insurance doesn't pay for it & there is no way I can afford it. My sisters, who live 3 states away in MO, married a stockbroker & a banker & have LOTS of $ but, even though they give generous Christmas & birthday 🎂 checks, I get grilled, judged & have to justify if I need some help. I don't know if they wld help me pay for a treatment or not. I can try.
KYgrl
It sounds as if you’ve had a miserable time lately. It sounds as if you have very dry skin. Zerobase is only on prescription but it has been great on my skin which has lots of dry raised red spots. I take a lot of meds that not only put such a toll on your body but your mood too. Have you tried the app Headspace? It not only can help you relax but take your mind off OC
Acupuncture is also a great idea. It’ll also get you out and mixing with people. Does your hospice run wellness sessions ?
LA xx
Thank you, LA. I will check into the palliative center here abt what they have available. The Cancer Center also has a number of programs & services, including massage therapy (but I can't have that w/some of my side effects). I know I need relief so I will do some searching.
KYgrl
First recurrence
Decision time: What was your second line treatment and did it work....(especially for platinum resistant)
Stage IVb Uterine Cancer
gemcitabine with carboplatin for Platinum resistant
