Ok, I'm definitley in this sorority now

12357

Comments

  • DebiR
    DebiR Member Posts: 38 Member

    Cheese Update-Minor Bump

    Had a reaction to the taxol.  So dosing up on steroids tonight, will up dose of Benadryl and steroids tomorrow and slow down drip. Praying this desensitization works. Anyone else have this happen and desensitize successfully?

    I had a problem with Taxol also

    I had a reaction the first and second time.  Both times they stopped, gave me benadryl and then restarted.  The second time they slowed down the drip but I still had a reaction.  They wanted to change Taxol to Adriamycin (aka the red devil).  Since I was in a study and I wanted remain in it and didn't really like what I read about Adriamycin I did some research on my own and found that the Cleveland Clinic had developed a desensitization protocol.  I'm in Cleveland but was going to University Hospitals for treatment.  I asked my case nurse about this option and the doctor agreed.  It worked!  

    You can find more details in my previous post here:

    https://csn.cancer.org/node/285413

    Debi

  • Cheese Update-Minor Bump

    Had a reaction to the taxol.  So dosing up on steroids tonight, will up dose of Benadryl and steroids tomorrow and slow down drip. Praying this desensitization works. Anyone else have this happen and desensitize successfully?

    What a way to start your treatments

    Sorry you had the reaction.  Did you have oral steroids to take the day before?  I didn't have a problem but did take 5 small pills (steroids) with the evening meal the night before my chemo, also a Claratin 10, then took another 5 small pills (steroids) and another Clartin the morning of the chemo.  At the chemo, they gave me a Benadryl.  I'm not sure what was in my bag of goodies but I think probably more steroids.  Thankfully I didn't have a reaction to Taxol.  I have heard that Taxotore is like Taxol but does not have a preservative that Taxol does (I think it's caster oil).  Hugs Nancy

  • Soup52
    Soup52 Member Posts: 908 Member
    unknown said:

    What a way to start your treatments

    Sorry you had the reaction.  Did you have oral steroids to take the day before?  I didn't have a problem but did take 5 small pills (steroids) with the evening meal the night before my chemo, also a Claratin 10, then took another 5 small pills (steroids) and another Clartin the morning of the chemo.  At the chemo, they gave me a Benadryl.  I'm not sure what was in my bag of goodies but I think probably more steroids.  Thankfully I didn't have a reaction to Taxol.  I have heard that Taxotore is like Taxol but does not have a preservative that Taxol does (I think it's caster oil).  Hugs Nancy

    I also had the five steroid

    I also had the five steroid pills the night before as well as the morning of Chemo. Maybe that helped me. One thing I did notice is that I was really flushed on my face and chest. Perhaps this was a slight reaction? My dr. Instructions is to do a very slow drip of which I am thankful. I hope they get your dosage and reaction turn around. I'm sorry your first treatment had to start this way.

  • Kvdyson
    Kvdyson Member Posts: 789
    unknown said:

    What a way to start your treatments

    Sorry you had the reaction.  Did you have oral steroids to take the day before?  I didn't have a problem but did take 5 small pills (steroids) with the evening meal the night before my chemo, also a Claratin 10, then took another 5 small pills (steroids) and another Clartin the morning of the chemo.  At the chemo, they gave me a Benadryl.  I'm not sure what was in my bag of goodies but I think probably more steroids.  Thankfully I didn't have a reaction to Taxol.  I have heard that Taxotore is like Taxol but does not have a preservative that Taxol does (I think it's caster oil).  Hugs Nancy

    Decadron Steroid

    I take one decadron pill at 9 pm the evening before and another at 7 am the morning of my Taxol day to prevent an allergic reaction. Also, the infusion nurses give me a bag of Benadryl about an hour before they start the drip. That Taxol is nasty stuff!

  • Editgrl
    Editgrl Member Posts: 903 Member
    unknown said:

    What a way to start your treatments

    Sorry you had the reaction.  Did you have oral steroids to take the day before?  I didn't have a problem but did take 5 small pills (steroids) with the evening meal the night before my chemo, also a Claratin 10, then took another 5 small pills (steroids) and another Clartin the morning of the chemo.  At the chemo, they gave me a Benadryl.  I'm not sure what was in my bag of goodies but I think probably more steroids.  Thankfully I didn't have a reaction to Taxol.  I have heard that Taxotore is like Taxol but does not have a preservative that Taxol does (I think it's caster oil).  Hugs Nancy

    I did the same as Don's wife

    with the 5 tiny Decadron tablets the night before and then early in the moring of chemo.  Plus Benadryl as part of the pre-meds.  The only time I had any reaction was a slight tingling in arms and legs, I think chemo 4.  Other than that, I was clear.  Hope the steroids/Benadryl work for you,

    Chris

  • cindy0519
    cindy0519 Member Posts: 173

    Thanks for the feedback on acupuncture

    Thanks so much cindy.  There doesn't seem to be a down side.  I get my chemo on Wednesdays and plan to get acupunture on Mondays or Tuesdays.  How did you schedule yours?

    I had chemo on Wednesdays too

    I had chemo on Wednesdays too.  I usually had accupunture on Monday and massage on Thursday.  A Thursday appointment was very doable because I generally felt okay due to the steroids that they give you with chemo and those that you take after. 

    I'll be interested to hear how and if you think it helps you....and I hope it does!!

  • cindy0519
    cindy0519 Member Posts: 173

    Cheese Update-Minor Bump

    Had a reaction to the taxol.  So dosing up on steroids tonight, will up dose of Benadryl and steroids tomorrow and slow down drip. Praying this desensitization works. Anyone else have this happen and desensitize successfully?

    Desenitization

    I had a reaction to Taxol on my fourth cycle (to everyone's suprise because they say it usually happens cycle 1 or 2).  Taxol was stopped and more steroids/Benydryl administered before restarting Taxol much slower.  During cycle 5 I had a reaction to Carboplatin - same drill - stopped infusion more steriods and Bendryl - rash did not improve after 20 mins so another "bigger, badder" steriod (I can't recall ever hearing the name) was given and the rash slowly began to disappear.  The oncologist came down during all of this and a decision was made that cycle 6 would be done inpatient at the hospital so a more formal desensitization protocol could be done and all the support of the hospital was at the ready in case of a severe reaction, which the oncologist felt strongly might happen.

    For cycle 6's desesentization protocol I took two Dexamethozone tablets the evening before cycle 6, I did not normally take any pre-infusion but took it for two days after.  I checked into the hopsital when the had a bed available about 10:20am and was given all of the normal pre-infusion drugs.  I got each of the drugs (Taxol and Carboplatin) in three bags: the first was very diluted with saline and infused very, very slowly, the second a bit less diluted and infused a bit faster, and the last bag had little dilution and the fastest infusion rate. The infused the Taxol first because they felt I was less likely to have a severe reaction to it.  Then the started the Carboplatin.   It took a total of 15 hours to do both drugs instead of the normal 4 1/2 hours. I had a nurse by my side the entire 15 hours.  I did still have a mild allergic reaction to the Carbo, in the form of a rash, on the last bag so the infusion was cut off about 15 mins before it finished.

     

  • CheeseQueen57
    CheeseQueen57 Member Posts: 933 Member
    No reaction yesterday

    The steroids worked and I had no reaction yesterday to the taxol. i spoke to the doctor who said  would dose up on steroids again next week and also do the slow drip. She assured me that we would gradually be able to reduce the steroids as time goes on. 

    On another note, the nurse thought the anti nausea meds would last until Saturday. NOT!  I dosed up today and just feeling mild nausea now. Was able to make 3 hour drive down to the beach. So far jufeel a little out of sorts but last night had hot flashes, heartburn, and chemo farts that I thought were going to kill my husband in his sleep!  Whew!  

    We'll see what tomorrow brings. Acupuncture on Tuesday. I'm also finding that my early morning meditations are also helping. So did my coloring book in the infusion room. 

    Hugs to all and thanks for all your feedback. So valuable. 

  • Editgrl
    Editgrl Member Posts: 903 Member

    No reaction yesterday

    The steroids worked and I had no reaction yesterday to the taxol. i spoke to the doctor who said  would dose up on steroids again next week and also do the slow drip. She assured me that we would gradually be able to reduce the steroids as time goes on. 

    On another note, the nurse thought the anti nausea meds would last until Saturday. NOT!  I dosed up today and just feeling mild nausea now. Was able to make 3 hour drive down to the beach. So far jufeel a little out of sorts but last night had hot flashes, heartburn, and chemo farts that I thought were going to kill my husband in his sleep!  Whew!  

    We'll see what tomorrow brings. Acupuncture on Tuesday. I'm also finding that my early morning meditations are also helping. So did my coloring book in the infusion room. 

    Hugs to all and thanks for all your feedback. So valuable. 

    Chemo farts!

    Oh,yeah, those were vile!  I even called my boyfriend one evening and said, "Don't come over here. I can't open enough windows."

  • Lou Ann M
    Lou Ann M Member Posts: 996 Member

    No reaction yesterday

    The steroids worked and I had no reaction yesterday to the taxol. i spoke to the doctor who said  would dose up on steroids again next week and also do the slow drip. She assured me that we would gradually be able to reduce the steroids as time goes on. 

    On another note, the nurse thought the anti nausea meds would last until Saturday. NOT!  I dosed up today and just feeling mild nausea now. Was able to make 3 hour drive down to the beach. So far jufeel a little out of sorts but last night had hot flashes, heartburn, and chemo farts that I thought were going to kill my husband in his sleep!  Whew!  

    We'll see what tomorrow brings. Acupuncture on Tuesday. I'm also finding that my early morning meditations are also helping. So did my coloring book in the infusion room. 

    Hugs to all and thanks for all your feedback. So valuable. 

    So glad everything went

    So glad everything went better today.  I only had one reaction to Taxol, but several to the Carbo. 

    I love he color books. I have a whole collection. I find them very relaxing.

    Hugs and prayers, Lou Ann

  • TeddyandBears_Mom
    TeddyandBears_Mom Member Posts: 1,811 Member
    OMG, they are the worst! I'm

    OMG, they are the worst! I'm telling you... Gas-X was one of my best friends!

    I hope you get through this with minimal pain!

    Love and Hugs,

    Cindi

  • BabyCoach
    BabyCoach Member Posts: 95
    edited April 2016 #93
    Trip postponed

    Had to postpone the aforementioned trip to Russia and Scandinavia.  Recovering from this DiVinci surgery has been arduous.  Intially a breeze I was so encouraged until the severe allergies to something (glue or antibiotic) inserted in the puncture wounds became systemic with hives, welts all over my abdomen, wrists, and neck.  Requiring prescriptions.  UGH.  Then a nasty bladder infection from the catheter showed up.  Then a horrible reaction to a mycin antibiiotic which I inform everyone that I cannot take.  I did not realize that Bactrim is a mycin; since it is written all over my chart, and she was told, the PA should have known better.  After a switch in meds, i'm still trying to resolve the infection.  NOW, the pain in my groin when I walk and subsequnt swelling MIGHT be the beginnings of lymphedema.  In three days in my surgery post-op and treatment planning for monitoring.  I just hunker down keeping a focus on my good path report: Grade1; Stage 1-A.  Trip postponed until September, but still on the calendar!

    Mary Ann

  • EZLiving66
    EZLiving66 Member Posts: 1,482 Member
    BabyCoach said:

    Trip postponed

    Had to postpone the aforementioned trip to Russia and Scandinavia.  Recovering from this DiVinci surgery has been arduous.  Intially a breeze I was so encouraged until the severe allergies to something (glue or antibiotic) inserted in the puncture wounds became systemic with hives, welts all over my abdomen, wrists, and neck.  Requiring prescriptions.  UGH.  Then a nasty bladder infection from the catheter showed up.  Then a horrible reaction to a mycin antibiiotic which I inform everyone that I cannot take.  I did not realize that Bactrim is a mycin; since it is written all over my chart, and she was told, the PA should have known better.  After a switch in meds, i'm still trying to resolve the infection.  NOW, the pain in my groin when I walk and subsequnt swelling MIGHT be the beginnings of lymphedema.  In three days in my surgery post-op and treatment planning for monitoring.  I just hunker down keeping a focus on my good path report: Grade1; Stage 1-A.  Trip postponed until September, but still on the calendar!

    Mary Ann

    I'm so sorry you're having

    I'm so sorry you're having these complications but that diagnosis is WONDERFUL!!!  I hope your new antibiotic works and you can take that trip this fall.

    Love, 

    Eldri

  • Lou Ann M
    Lou Ann M Member Posts: 996 Member
    Mary Ann

    i am sorry that you are having so many healing problems with the di Vinci.  I hope,you,are on the,road to healing now and that you will be all healed and healthy when September and trip.time gets here.  Hugs and prayers, Lou Ann

  • ncg007
    ncg007 Member Posts: 138 Member
    BabyCoach said:

    Trip postponed

    Had to postpone the aforementioned trip to Russia and Scandinavia.  Recovering from this DiVinci surgery has been arduous.  Intially a breeze I was so encouraged until the severe allergies to something (glue or antibiotic) inserted in the puncture wounds became systemic with hives, welts all over my abdomen, wrists, and neck.  Requiring prescriptions.  UGH.  Then a nasty bladder infection from the catheter showed up.  Then a horrible reaction to a mycin antibiiotic which I inform everyone that I cannot take.  I did not realize that Bactrim is a mycin; since it is written all over my chart, and she was told, the PA should have known better.  After a switch in meds, i'm still trying to resolve the infection.  NOW, the pain in my groin when I walk and subsequnt swelling MIGHT be the beginnings of lymphedema.  In three days in my surgery post-op and treatment planning for monitoring.  I just hunker down keeping a focus on my good path report: Grade1; Stage 1-A.  Trip postponed until September, but still on the calendar!

    Mary Ann

    Mary Ann

    Sorry to hear of all your surgery recovery issues.  Good news on your low stage 1.  I wish you a speedy recovery.  Hang in there !  Hugs!

    Nancy

  • CheeseQueen57
    CheeseQueen57 Member Posts: 933 Member
    BabyCoach said:

    Trip postponed

    Had to postpone the aforementioned trip to Russia and Scandinavia.  Recovering from this DiVinci surgery has been arduous.  Intially a breeze I was so encouraged until the severe allergies to something (glue or antibiotic) inserted in the puncture wounds became systemic with hives, welts all over my abdomen, wrists, and neck.  Requiring prescriptions.  UGH.  Then a nasty bladder infection from the catheter showed up.  Then a horrible reaction to a mycin antibiiotic which I inform everyone that I cannot take.  I did not realize that Bactrim is a mycin; since it is written all over my chart, and she was told, the PA should have known better.  After a switch in meds, i'm still trying to resolve the infection.  NOW, the pain in my groin when I walk and subsequnt swelling MIGHT be the beginnings of lymphedema.  In three days in my surgery post-op and treatment planning for monitoring.  I just hunker down keeping a focus on my good path report: Grade1; Stage 1-A.  Trip postponed until September, but still on the calendar!

    Mary Ann

    Sorry trip postponed

    Sorry you had to postpone your trip, but by Sept you will be fully healed. I don't know why they use that dermabond crap. I have horrible scars on my belly from a couple of the areas but didn't have the problems you've had. When I had my port inserted, I made sure the surgeon wasn't using that crap. Good luck on your recovery   

  • Kvdyson
    Kvdyson Member Posts: 789
    BabyCoach said:

    Trip postponed

    Had to postpone the aforementioned trip to Russia and Scandinavia.  Recovering from this DiVinci surgery has been arduous.  Intially a breeze I was so encouraged until the severe allergies to something (glue or antibiotic) inserted in the puncture wounds became systemic with hives, welts all over my abdomen, wrists, and neck.  Requiring prescriptions.  UGH.  Then a nasty bladder infection from the catheter showed up.  Then a horrible reaction to a mycin antibiiotic which I inform everyone that I cannot take.  I did not realize that Bactrim is a mycin; since it is written all over my chart, and she was told, the PA should have known better.  After a switch in meds, i'm still trying to resolve the infection.  NOW, the pain in my groin when I walk and subsequnt swelling MIGHT be the beginnings of lymphedema.  In three days in my surgery post-op and treatment planning for monitoring.  I just hunker down keeping a focus on my good path report: Grade1; Stage 1-A.  Trip postponed until September, but still on the calendar!

    Mary Ann

    Great Path Report!

    Mary Ann, congrats on the great pathology report! So sorry to hear of your trouble recuperating from your surgery. Praying that you be healed up in time to make your September trip. Congrats again!! Kim

     

  • brissance
    brissance Member Posts: 192
    What a Hoot

    Hello all and thank you for letting me join you.  I know little but I will be glad to share or help as much as possible.  All for one and one for all.  I have 1A grade 3...   diagnosed Dec, surgery Feb and now going through chemo 3 rounds platinum/taxol-taxere then 25 external rad, 3 internal and then 3 more chemos.  I am at a great hospital and think all is right in the world.  Now shining my armor to do battle with the evil one...  Cancer.

    I can't help but smile as I read your posts..  I love it.  I guess it is gallows humor but laughter is the best medicine and I am enjoying taking mine.  Chemo Farts...  holy cow.  (Very real and deadly but up until you laughed about it...  it was just another malady I try to avoid....  now I will giggle like a juniori high boy)   I too had a reactioin to taxol.. I took the 20 mg of steriods the night before and the morning of.. had benedryl... slow drip and at 12 min into first infusion it felt like a truck had run into my back, I flushed and couldn't breath... just short of being coded when I came around.  Next time tried again,,,  slower drip more meds and had 2 reactions but not as severe.  So Wednesday I try Taxere..  allegedly the same minus the oil.  I am sure it will be fine.  The sweet heart of a chemo nurse seved me well.  She actually had two sensiitivity reactions that day.  Mine was the worse she had seen.  I started calling her Killer and the whole floor now calls her killer.  What a delight she is.  Anyway, I hope that a) missing two round of Taxol and b) changing to the less preferred Taxere doesn't impact my final outcome.  I want to get all the poison I can to kill that stuff.

    Again thanks all of you for making this so much easier with the face the fact laughter and support.  

  • brissance said:

    What a Hoot

    Hello all and thank you for letting me join you.  I know little but I will be glad to share or help as much as possible.  All for one and one for all.  I have 1A grade 3...   diagnosed Dec, surgery Feb and now going through chemo 3 rounds platinum/taxol-taxere then 25 external rad, 3 internal and then 3 more chemos.  I am at a great hospital and think all is right in the world.  Now shining my armor to do battle with the evil one...  Cancer.

    I can't help but smile as I read your posts..  I love it.  I guess it is gallows humor but laughter is the best medicine and I am enjoying taking mine.  Chemo Farts...  holy cow.  (Very real and deadly but up until you laughed about it...  it was just another malady I try to avoid....  now I will giggle like a juniori high boy)   I too had a reactioin to taxol.. I took the 20 mg of steriods the night before and the morning of.. had benedryl... slow drip and at 12 min into first infusion it felt like a truck had run into my back, I flushed and couldn't breath... just short of being coded when I came around.  Next time tried again,,,  slower drip more meds and had 2 reactions but not as severe.  So Wednesday I try Taxere..  allegedly the same minus the oil.  I am sure it will be fine.  The sweet heart of a chemo nurse seved me well.  She actually had two sensiitivity reactions that day.  Mine was the worse she had seen.  I started calling her Killer and the whole floor now calls her killer.  What a delight she is.  Anyway, I hope that a) missing two round of Taxol and b) changing to the less preferred Taxere doesn't impact my final outcome.  I want to get all the poison I can to kill that stuff.

    Again thanks all of you for making this so much easier with the face the fact laughter and support.  

    Welcome

    Sorry you had reaction to Taxol, and hope that switching to taxatore solves that problem.  I had to have my doses lowered after round 3, and had to skip taxol for round 5 after my doctor became concerned with my neuropathy in my feet.  He said the only other option he would give me was taxatore, but he stressed that skipping a round of taxol would not affect my outcome.  So whatever that means, I trust him.  I have heard one other person on the Ovarian board that said her doctor told her that the first round of taxol killed most of the cancer, and the second round cleaned up what was left.  If that is true, than even one round of taxol is a great benefit.  Anyway, after missing two weeks straight with chemo 6, I finally completed it on April 14th, got to ring the bell.  Hugs Nancy

  • EZLiving66
    EZLiving66 Member Posts: 1,482 Member
    brissance said:

    What a Hoot

    Hello all and thank you for letting me join you.  I know little but I will be glad to share or help as much as possible.  All for one and one for all.  I have 1A grade 3...   diagnosed Dec, surgery Feb and now going through chemo 3 rounds platinum/taxol-taxere then 25 external rad, 3 internal and then 3 more chemos.  I am at a great hospital and think all is right in the world.  Now shining my armor to do battle with the evil one...  Cancer.

    I can't help but smile as I read your posts..  I love it.  I guess it is gallows humor but laughter is the best medicine and I am enjoying taking mine.  Chemo Farts...  holy cow.  (Very real and deadly but up until you laughed about it...  it was just another malady I try to avoid....  now I will giggle like a juniori high boy)   I too had a reactioin to taxol.. I took the 20 mg of steriods the night before and the morning of.. had benedryl... slow drip and at 12 min into first infusion it felt like a truck had run into my back, I flushed and couldn't breath... just short of being coded when I came around.  Next time tried again,,,  slower drip more meds and had 2 reactions but not as severe.  So Wednesday I try Taxere..  allegedly the same minus the oil.  I am sure it will be fine.  The sweet heart of a chemo nurse seved me well.  She actually had two sensiitivity reactions that day.  Mine was the worse she had seen.  I started calling her Killer and the whole floor now calls her killer.  What a delight she is.  Anyway, I hope that a) missing two round of Taxol and b) changing to the less preferred Taxere doesn't impact my final outcome.  I want to get all the poison I can to kill that stuff.

    Again thanks all of you for making this so much easier with the face the fact laughter and support.  

    HELLO!!!  I'm glad you found

    HELLO!!!  I'm glad you found us and I agree 100% - this board makes having cancer a bit easier.  There is always someone with extensive information and somebody to hold your hand or make you laugh.  I started with Taxotere and after chemo #3, I was done.  That was December 8th and I'm still doing physical therapy two days a week to "fix" me.  I think though, that although the Taxotere caused the neuropathy, most of my damage was done because my blood pressure and blood sugar went so high during chemo.

    Anyway, this is a great place to be and there are very few topics that are off limits as you found out after the "chemo farts" post - LOL!

    Love,

    Eldri