I am glad I am back on chemo !!!!!!!!!!!!!!!!!!!!!!!!

Tina Brown
Tina Brown Member Posts: 1,036 Member
edited March 2014 in Ovarian Cancer #1
Had my first Caelyx (doxil) yesterday and it was a pure breeze compared to carbo/taxol regime. It only lasted 90 minutes as opposed to 6 hours which in itself seemed far to short - but was good. Because the nurses here said it can cause total hair loss (brand name for the Caelyx is (liposomal doxorubicin) So I use d the cold cap during the infusion. Boy was it cold!!!! It was so cold it gave me the most painful head ache I have ever had!!!!! but I persevered and got used to it. However by the time it was beginning to thaw they made me take it off and replace it with another frozen one again. Bring on the pain.......... But if it keep the hair on my hair that I have been patiently nursing these last 7 months it will be worth it.

All in all I am feeling really reaaly good. All of my weird and strange bowel problems with the bloating, gas and diarrhoea has completely vanished and I now know it was IBS triggered off by anxiety and tension waiting to go back on chemo.

You see I was terrified of going back on chemo - always scared of having a reccurance so quickly after chemo had finished and when I found out my numbers had gone up I was petrified and thought my time was almost up. I am on anti-depressants so I was not really feeling the anxiety in my mind so it was going to my stomach (my weakest part of my body) and giving me anxiety in the form of terrible IBS. However the morning I went back on chemo it all just stopped? I had this lightness about me a feeling like a weight had been lifted from my shoulders - I was being looked after and I felt safe. As long as I was going to the hospital and receiving chemo I was SAFE. I know it is not a guarentee cos cancer can still grow sometimes on chemo - but it is a pretty safe bet.

So I am feeling so well - both mentally and physically. So far I have had no side effect (day 2) and I am feeling calm and at peace.

Now how many cancer patients can say they are glad to be back on chemo?

Its so good to come on here and tell you guys all about this because I don't really think my friends & family .really understand. Thanks for listen (reading!!!)

Love Tina xxxx
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Comments

  • nancy591
    nancy591 Member Posts: 1,027 Member
    cold caps
    A nurse at my cancer center told me they investigated ice caps to prevent hair loss. I'm not sure what the outcome was but they do not use ice caps there. I don't think Doxil has a high incidence of hair loss. I went on Doxil after my brief remission and did not lose any hair. In fact, I've been on chemo since January of this year and have a full head of hair. I'm only mentioning this because I hate to see you endure the ice cap if it is really not needed!

    I wish you much success with this regimen. I complained initially about the hyperpigmentation on my legs. It was very unslightly. My feet did look terrible too. Overall though, I would have happily stayed on it forever!!!

    MUCH LUCK!!!
    XOXOXO
  • Cafewoman53
    Cafewoman53 Member Posts: 735 Member
    Hi Tina I am so glad you
    Hi Tina I am so glad you are feeling better, I hope you have an "easy" time with this chemo !
    Colleen
  • beth1465
    beth1465 Member Posts: 63 Member
    I totally understand. I was
    I totally understand. I was nervous about going off chemo last June. Chemo was my safety net! My numbers are rising again so I may be going back on, not sure yet. Good luck with everything!

    Beth
  • clamryn
    clamryn Member Posts: 508
    Doxil and hair loss
    Hi Tina, I am so glad that you are feeling okay. Isn't it something how we can get worked up and it can cause so much in our bodies. I have done the same.

    I was on the Doxil this past year for 8 treatments and I decided not to shave my head. I wanted to see if I would lose it. Well it did start coming out in small amounts; however, I did not lose it all. Maybe the ice cap will work. My doctor & nurse never brought up that option to me. I am still wearing my wig. I am hoping that when my hair starts growing back that it will be thicker.

    The only side effect that I had while on the Doxil was the hand/foot syndrome. They would give me ice packs for them and I would also keep a lot of lotion on them. Other that that, I could stay on the Doxil.

    Good luck with the Doxil. I know you will like it better than Taxol.

    Linda
  • srwruns
    srwruns Member Posts: 343
    Good news that some of your
    Good news that some of your symptoms are related to IBS. Strange thing about chemo isn't it? I haven't started it yet, yet I find myself desiring to get started. There does seem to be a "safety net" feeling aboout it. Hate it/Love it conundrum. Good luck with your new treatment.
  • LPack
    LPack Member Posts: 645
    hair
    Tina,

    I have had 4 infusions of Doxil and still have my hair. Not as thick, but than again I was on cisplatin/gemzar right before. None of these are suppose to cause baldness but mild to moderate hair loss. I still have my "stuff" from taxol/carbo.

    I go to The James Cancer Center and have yet to see an ice cap for the head or for any other part of the body! Next time I go I am going to ask. Then again, Jerry and I both noticed everytime we go I am the only one having chemo that is orange. Guess I have missed the other gals on Doxil.

    Glad it was easier and faster. It is suppose to be less invasive, works slower too.

    Thanks for your update.

    Libby
  • pat1070
    pat1070 Member Posts: 13
    Glad to see your feeling better
    I think this disease can make you a little crazy. I too am on medication. I start not eating & find symptoms that are not really there.
  • kayandok
    kayandok Member Posts: 1,202 Member
    Hi Tina,
    I know the feeling, I always know when I need to be back in treatment, because I look forward to chemo. My bowels do weird things too, when I am anxious, although I never really feel that I am.

    Although you probably won't loose your hair on doxil (I had 7 infusions last year without any loss at all) and the cold cap is not necessary for the hair, it will help to cool your body down and that is helpful for doxil. I also wrapped my ankles and writs with ice packs, while having the doxil infusions, to cool down. Bonnie has an old post that gives the details of doxil that helped me. I think LInda may have re-posted it too.

    Take care, and smooth sailing on the doxil.

    Kathleen❤
  • Tina Brown
    Tina Brown Member Posts: 1,036 Member
    LPack said:

    hair
    Tina,

    I have had 4 infusions of Doxil and still have my hair. Not as thick, but than again I was on cisplatin/gemzar right before. None of these are suppose to cause baldness but mild to moderate hair loss. I still have my "stuff" from taxol/carbo.

    I go to The James Cancer Center and have yet to see an ice cap for the head or for any other part of the body! Next time I go I am going to ask. Then again, Jerry and I both noticed everytime we go I am the only one having chemo that is orange. Guess I have missed the other gals on Doxil.

    Glad it was easier and faster. It is suppose to be less invasive, works slower too.

    Thanks for your update.

    Libby

    Thanks Libby for your imput
    Thanks Libby for your imput. You say it is less invasive. I thought so because they are spaced 4 weeks apart instead of 3 weeks for the carbo/taxol. You also say it works slower..... do you mean the effects take longer? Does this mean they may be longer lasting????? I only had 7 month remission with the Carbo/taxol regime. If that is the case it will suit me fine. If the side effects are better then I don't mind being on it quite so much.

    Tina xx
  • Hissy_Fitz
    Hissy_Fitz Member Posts: 1,834
    Did they offer you the cold
    Did they offer you the cold caps with the Carbo/Taxol? Since Taxol is known for causing hair loss, that would make sense, but I don't remember you mentioning it.

    Carlene
  • Tina Brown
    Tina Brown Member Posts: 1,036 Member

    Did they offer you the cold
    Did they offer you the cold caps with the Carbo/Taxol? Since Taxol is known for causing hair loss, that would make sense, but I don't remember you mentioning it.

    Carlene

    Cold cap
    The nurses never offered me the cold cap on taxol. It wasn't until I started taxol that I read about them, but by then it was too late. You would have thought they would've told me wouldn't you? So this time I thought I will be more pro-active and I asked them about them. No problem, "we have a freezer in each ward full of them" What happens is that you have to wear one 10 minutes before infusion and need to keep changing them as they thaw. My Dad or any relative just goes over to the freezer and removes another frozen cap and places the used one on the side (the nurses re=freeze them for the next day)

    They are very very cold (doh) but I was not prepared for the initial excruiating headache it gives you. So after 4 -5 minutes of intense pain it was OK and was bearable.

    Here in the UK the literature for my chemo (which is called liposomal doxorubicin
    and the brand name is Cealyx) states quite clearly that "total hair loss" can be expected. However I am also speaking to 2 ladies from the UK on another site and they are on Caelyx and have not lost their hair. So I will persevere as I have started. Lossing my hair a second would be a massive mental and emotional blow for me & if I cna keep it my morale will be much better. I don't like the fussiness of the chemo curl - but I have hair on my head and it is growing well.

    It is all about achieving a good quality of life and now I am on my second line chemo I have a completely different outlook. I have decided to buy myself a new car - it is a convertable sporty car. It is something I have always wanted and will not break the bank. But what is the point of just existing?????? I may be around for years yet but a year down the line (I was diagnosed this time last year) and I have a completely different attitude now.

    It is so nice to come on here and chat to all of you lovely ladies who I have never met but feel you are all my good friends.

    Take care love Tina xx
  • sheryl912
    sheryl912 Member Posts: 19

    Cold cap
    The nurses never offered me the cold cap on taxol. It wasn't until I started taxol that I read about them, but by then it was too late. You would have thought they would've told me wouldn't you? So this time I thought I will be more pro-active and I asked them about them. No problem, "we have a freezer in each ward full of them" What happens is that you have to wear one 10 minutes before infusion and need to keep changing them as they thaw. My Dad or any relative just goes over to the freezer and removes another frozen cap and places the used one on the side (the nurses re=freeze them for the next day)

    They are very very cold (doh) but I was not prepared for the initial excruiating headache it gives you. So after 4 -5 minutes of intense pain it was OK and was bearable.

    Here in the UK the literature for my chemo (which is called liposomal doxorubicin
    and the brand name is Cealyx) states quite clearly that "total hair loss" can be expected. However I am also speaking to 2 ladies from the UK on another site and they are on Caelyx and have not lost their hair. So I will persevere as I have started. Lossing my hair a second would be a massive mental and emotional blow for me & if I cna keep it my morale will be much better. I don't like the fussiness of the chemo curl - but I have hair on my head and it is growing well.

    It is all about achieving a good quality of life and now I am on my second line chemo I have a completely different outlook. I have decided to buy myself a new car - it is a convertable sporty car. It is something I have always wanted and will not break the bank. But what is the point of just existing?????? I may be around for years yet but a year down the line (I was diagnosed this time last year) and I have a completely different attitude now.

    It is so nice to come on here and chat to all of you lovely ladies who I have never met but feel you are all my good friends.

    Take care love Tina xx

    Did they have you ice your
    Did they have you ice your wrists and ankles too?

    *hugs* Hoping the cold caps work for you. But really REALLY hoping the chemo works for you as well!

    Sheryl
  • This comment has been removed by the Moderator
  • nancy591
    nancy591 Member Posts: 1,027 Member

    Cold cap
    The nurses never offered me the cold cap on taxol. It wasn't until I started taxol that I read about them, but by then it was too late. You would have thought they would've told me wouldn't you? So this time I thought I will be more pro-active and I asked them about them. No problem, "we have a freezer in each ward full of them" What happens is that you have to wear one 10 minutes before infusion and need to keep changing them as they thaw. My Dad or any relative just goes over to the freezer and removes another frozen cap and places the used one on the side (the nurses re=freeze them for the next day)

    They are very very cold (doh) but I was not prepared for the initial excruiating headache it gives you. So after 4 -5 minutes of intense pain it was OK and was bearable.

    Here in the UK the literature for my chemo (which is called liposomal doxorubicin
    and the brand name is Cealyx) states quite clearly that "total hair loss" can be expected. However I am also speaking to 2 ladies from the UK on another site and they are on Caelyx and have not lost their hair. So I will persevere as I have started. Lossing my hair a second would be a massive mental and emotional blow for me & if I cna keep it my morale will be much better. I don't like the fussiness of the chemo curl - but I have hair on my head and it is growing well.

    It is all about achieving a good quality of life and now I am on my second line chemo I have a completely different outlook. I have decided to buy myself a new car - it is a convertable sporty car. It is something I have always wanted and will not break the bank. But what is the point of just existing?????? I may be around for years yet but a year down the line (I was diagnosed this time last year) and I have a completely different attitude now.

    It is so nice to come on here and chat to all of you lovely ladies who I have never met but feel you are all my good friends.

    Take care love Tina xx

    sports car
    My job officially let me go over a year ago and my small retirement sat in a 401b. I have adequate life insurance and this small retirement wouldn't make that big of a difference. I cashed out my retirement and bought a sports car as well. Of course I had to buy a 4 seater as I do have two young kids. This convertible car is a tealish-blue. I got vanity plates that say 'CUREOVCA' I'll post a pic soon.

    Have fun, Tina. Enjoy your new ride!!!
  • LPack
    LPack Member Posts: 645

    Thanks Libby for your imput
    Thanks Libby for your imput. You say it is less invasive. I thought so because they are spaced 4 weeks apart instead of 3 weeks for the carbo/taxol. You also say it works slower..... do you mean the effects take longer? Does this mean they may be longer lasting????? I only had 7 month remission with the Carbo/taxol regime. If that is the case it will suit me fine. If the side effects are better then I don't mind being on it quite so much.

    Tina xx

    longer
    Tina,

    When I had my first CTscan after 2 infusion there had been no change in my tumor. They onc/gyn told me it takes longer for doxil to work. But my CA125 went from 363 to 151 so I know it is doing something!

    I am now 2 weeks from my 4th infusion today and I woke up with mouth sores! This has happened the last 3 infusions! This may be my worse side effect. I do have magic mouth wash which numbs it for awhile. Lasts a good 10 days (the sores that is)!

    I sometimes think I may be going well not crazy but .................after having so much chemo in the last 2 years and over 9 months (few months NED in there) things do not always seem to be right! ☺ Lots of chemicals running around through my body! I pray my major organs are always protected from these chemicals. And have many people praying that on my behalf!

    Also doxil effects your mucous membranes:
    The mucous membranes (or mucosae; singular mucosa) are linings. of mostly endodermal origin, covered in epithelium, which are involved in absorption and secretion. They line cavities that are exposed to the external environment and internal organs. They are at several places continuous with skin: at the nostrils, the mouth, the lips, the eyelids, the ears, the genital area, and the anus. The sticky, thick fluid secreted by the mucous membranes and glands is termed mucus. The term mucous membrane refers to where they are found in the body and not every mucous membrane secretes mucus.Body cavities featuring mucous membrane include most of the respiratory system.

    I really try to be proactive with the mouth but watching what I eat, etc does not seem to help me. I also use sanitary flush wipes when I go to the bathroom (bowel) which I had anyways when on chemo. Now especially since it is getting colder and dryer when I blow my nose there is some blood (which is not unusual for me as that usually happens, but with low platelets - got to watch it all ☺).

    I have not been sick at all on this chemo, so that has been a blessing.

    Libby ☺
  • Cold cap
    The nurses never offered me the cold cap on taxol. It wasn't until I started taxol that I read about them, but by then it was too late. You would have thought they would've told me wouldn't you? So this time I thought I will be more pro-active and I asked them about them. No problem, "we have a freezer in each ward full of them" What happens is that you have to wear one 10 minutes before infusion and need to keep changing them as they thaw. My Dad or any relative just goes over to the freezer and removes another frozen cap and places the used one on the side (the nurses re=freeze them for the next day)

    They are very very cold (doh) but I was not prepared for the initial excruiating headache it gives you. So after 4 -5 minutes of intense pain it was OK and was bearable.

    Here in the UK the literature for my chemo (which is called liposomal doxorubicin
    and the brand name is Cealyx) states quite clearly that "total hair loss" can be expected. However I am also speaking to 2 ladies from the UK on another site and they are on Caelyx and have not lost their hair. So I will persevere as I have started. Lossing my hair a second would be a massive mental and emotional blow for me & if I cna keep it my morale will be much better. I don't like the fussiness of the chemo curl - but I have hair on my head and it is growing well.

    It is all about achieving a good quality of life and now I am on my second line chemo I have a completely different outlook. I have decided to buy myself a new car - it is a convertable sporty car. It is something I have always wanted and will not break the bank. But what is the point of just existing?????? I may be around for years yet but a year down the line (I was diagnosed this time last year) and I have a completely different attitude now.

    It is so nice to come on here and chat to all of you lovely ladies who I have never met but feel you are all my good friends.

    Take care love Tina xx

    Cold cap.
    I think don't offer a cold cap for carbo/ taxol because the infusion lasts to long, when mum was very first diagnosed and she had fluid drained , I saw one in the room we were in and was intrigued , we asked the nurse what they were, she explained , but said you can only use them if it is a quick infusion! Not sure if there is a medical reason, or wether it would just be to dam cold to have on your head for that amount of time! Hope this helps.
    Liz.
  • lindaprocopio
    lindaprocopio Member Posts: 1,980
    unknown said:

    This comment has been removed by the Moderator

    You may not lose hair even WITHOUT the cold cap!
    I was completely 100% hairless bald from weekly taxol when I started Doxil. And my hair is growing BACK on the Doxil. If I can stay on it (and my late-November CT/PET will tell that story!) I believe I will have enough hair that I can go hatless/wigless by Christmas. So if that cold cap gives you a headache, I'm saying you very well might not need it.

    When I brought in my ice packs to ice my palms and the soles of my feet during my Doxil infusion, I showed the oncology nurse that pie chart from the Doxil website that shows how effective icing the hands and feet during the infusion can be in preventing hand/foot syndrome. She told me that they don't routinely encourage icing wrists/ankles during infusion because a few years ago they invested in the ice caps and freezers and used them to prevent hair loss, and their conclusion was that the caps don't make a significant difference and are too painful for the patient. So they no longer use cold caps OR ice feet/hands during chemo, although they encourage those who want to do either to go ahead on their own. Now, my own take on this is that they work in a world of bald women and don't know how awful losing your hair can be, so it is a very personal decision how much pain you are willing to endure to help you keep your hair.

    I've lost my hair from chemo 3 times and am thrilled that Doxil allows me to have hair again. But I don't plan to use a cold cap and DO plan to keep icing my palms and the soles of my feet during my Doxil infusion.

    And I COMPLETELY understand being happy to be back in chemo. Even though my CA125 has gone up after each of my 2 rounds of Doxil, I comfort myself that even if my cancer is growing, I am already doing something to fight it, even if it turns out that Doxil is not as effective for me as it needs to be; it's SOMETHING. And I am happier being monitored every 2 weeks, rather than the 'not knowing' that is a part of a chemo break. It sounds warped, even as I type it, because I simultaneously LONG for a chemo break! ARGH!
  • Cafewoman53
    Cafewoman53 Member Posts: 735 Member
    Ice caps
    Twenty years ago my best friend was in treatment for breast cancer and they offered ice caps but then discontinued them because they kept the chemo from circulating to the head so it was giving the cancer cells a "safe "place to hide.
    I would ask what has changed that they have brought them back.
    Colleen
  • Ice caps
    Twenty years ago my best friend was in treatment for breast cancer and they offered ice caps but then discontinued them because they kept the chemo from circulating to the head so it was giving the cancer cells a "safe "place to hide.
    I would ask what has changed that they have brought them back.
    Colleen

    @Colleen, I remember them
    @Colleen, I remember them saying that also , only certain patients can have them, if they are 100% sure that the cancer is contained in the area that is being treated, amazing what you forget!
  • Hissy_Fitz
    Hissy_Fitz Member Posts: 1,834

    @Colleen, I remember them
    @Colleen, I remember them saying that also , only certain patients can have them, if they are 100% sure that the cancer is contained in the area that is being treated, amazing what you forget!

    They are expensive, and
    They are expensive, and probably not covered by insurance in the US.

    From their website...
    There is a fixed monthly rental charge for a set of Penguin Cold Caps of £328 (approximately $429) regardless of how many Caps are required.

    • A one off deposit of £400 (approximately $600) is required which is refunded when the caps are returned to us in good condition.