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My Chemotherapy Journey

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Comments

  • exbrnxgrl
    exbrnxgrl Member Posts: 5,355

    pneuma,

    Please do some reading on genetic mutations and breast cancer. You will find that the vast majority of breast cancers do not occur because of known genetic mutations. Only about 15-20% arise from these mutations. My situation is similar in that I have a grandparent who had bc, a sister who passed away from a uterine sarcoma, and I belong to an ethnic/religious minority with a higher rate of BRCA genes than the general population. My genetic testing? All negative 🤷🏻‍♀️. Is there a genetic mutation that hasn’t been discovered that I and others might have? Possibly, but until they are discovered, there’s nothing actionable to be done.
    Pneuma, it seems that some of your anxiety stems from lack of understanding about your situation. I know you feel your doctors are not forthcoming and don’t answer your questions but you can google some of this yourself. Just make sure that your sources are reliable. Johns Hopkins, Cornell Weil Medical Center are just two examples of well regarded institutions that provide factual information. I understand that how you feel is important but if you read up and gather information, facts not feelings, you may lower your anxiety level . Feeling or believing things without a good understanding of the facts does nothing to lower your stress. Take care

  • maggiehopley
    maggiehopley Member Posts: 153

    Hi Pneuma. I did 14 rounds of Kadcyla. It was not too bad. Some fatigue and "crappy" feeling a few days after each infusion, but the rest of the time I felt normal. The one thing that was an issue was constipation. I took 2 stool softeners a day the week of infusion and one a day the rest of the time. That helped so much!

  • pneuma
    pneuma Member Posts: 221

    I hope I have the same 'easy' SEs from kadcyla. So far mine is - both my legs are sore especially at night. And nosebleed again. Just like at the start of my 6 chemo sessions. The nostrils also bleeds alternately like before. Weird.

    My onco recommend ibupofren or tylenol but my liver numbers are high so I don't want to do that. I also am not a pill popper. She also recommended bengay ointment and that's what I use.

    And then I remember I actually have the THC pills specifically to help you sleep. So I took that. The effect is that at least I am able to sleep without being bothered with my legs being sore but when I wake up to pee, then I feel it. LOL.

  • pneuma
    pneuma Member Posts: 221

    My MAIN stress is the side effects of treatments. And the ridiculous taking of others meds to help with the side effects and some meds they gave me for side effects is for schizophrenia or dementia I think. LOL. wow.

  • pneuma
    pneuma Member Posts: 221

    I forgot to add that the radiologist is actually doing localized radiation. She is doing external high beam. She won't zap my nodes since she said there's no node involvement. Which made me feel good because that RIBP I searched is actually common if they radiate your nodes. I asked her about that. And so that's what she told me that she will only radiate the tumor site.

  • exbrnxgrl
    exbrnxgrl Member Posts: 5,355

    pneuma,
    The side effects of drugs related to cancer treatment are well documented. This includes common side effects and very rare ones as there is a legal obligation to disclose such things. Schizophrenia and dementia may be listed as se’s but I would venture to guess that they are very rare as I have never heard anyone mention that this has actually happened (not saying never, but very low). So one way to de-stress over this is to look at the frequency with which some of these things occur. There is little point in getting wound up about a side effect when the chances of experiencing it are very small. Try to gain some perspective on that.

    I doubt anyone here wanted to take those drugs but they understand that if they want a chance to beat bc, research based scientific evidence and resultant treatments provide the best chance with factual evidence to back it up. None of it is fun, most of us don’t want to take lots of meds but we understand that treatment for lower stages is needed to try to prevent metastatic disease. For the vast majority of, roughly 70%, treatment ends and they go on to live good lives. As rough as treatment may be, the potential result is pretty good, though there are never any guarantees.
    And as I have said before, you are the boss. Everything is ultimately your decision. Take care

  • pneuma
    pneuma Member Posts: 221
    edited December 2024

    Wow. The soreness I feel in my legs is gone. At least it does not bother me last night and as I am writing this, my legs feel fine.

    I hope this really is how my SEs in kadcyla and from radiation goes. But who really knows how these treatments will affect me.

    The only difference maybe is - I have appetite so I can really eat a lot. I also change my eating habits in a way that I eat healthier. I also start juicing. Not sure if it's my bro or sis that gave me their juicer but hey… it works!

    I also take women's multivitamins. My onco suggested to me earlier that I can drink sparkling water. I stopped drinking that because it bloats me up. Well, it still bloats me up, but I also started drinking sparkling water now I mostly add it to the juice from the juicer. It makes it taste better. Last time all I taste is celery, LOL. I have soda stream. I bought it MAINLY to drink sparkling water. I stopped drinking soda way before my diagnosis.

    My hair is also starting to grow… SLOOWLY. Can't wait to not wear caps/hats anymore. Wow.

    Oh…. when the plastic surgeon assistant finally took the tape off my nipple on my last appointment, my left nipple bled. well…. it is still bleeding but just a bit. I even took a pic of it, and send it to mychart. her nurse replied and said they will eventually heal by the time I have my radiation… well, I hope so. Good thing that's not the breast that will be radiated. But still…

  • pneuma
    pneuma Member Posts: 221

    So… well I guess the soreness on my legs is back. I thought the SE will fade away as time goes by but guess not! At least it's not as sore. Whatever.

    My vegetable juice taste nasty this week, not even the sparkling water can mask it. But hey it's good for me. So just chug it.

    Anyway on mychart reading my after visit summary I have a new prescription. The radiologist did tell me she will prescribe it but on mychart it says start using. LOL. She did not even prescribe it to me though. Or maybe she did and I can pick it up. But reading about it, honestly I would rather use aquaphor.

    It's called ELOCON. It's a steroid cream and it says it thins your skin. So why would I want to thin my skin during radiation? Like….? Are these Drs. for real? I can't even.

    And then on my appointment on Wed. It's called CT-sim. Why is it a different doctor and it's a male? He is probably a dosimetrist? I don't know anymore. LOL.

    Whatever.

  • exbrnxgrl
    exbrnxgrl Member Posts: 5,355
    edited December 2024

    You may have figured out by now that I am a teacher (retired, still subbing). That is at least half the reason I keep urging you to gain perspective and work with facts. It may help alleviate your anxiety. You might also consider preparing a list of questions or concerns before your appointments as it’s sometimes hard to think of those in the moment. Questions about why you are having a different doctor need to be asked of your medical facility or mo. Different facilities operate differently. As for being male, please speak up if that makes you uncomfortable. This is not an uncommon situation.
    So instead of throwing up your hands and saying , Whatever” or “Are these Drs. for real?” , educate yourself, advocate for yourself, and although your feelings count, don’t let them overshadow facts and scientific based research. Is conventional tx perfect, side effect free, or easy? NO and this information is always available and is neither secret nor hidden, as is the research to show efficacy.
    And last, I ask again, considering that you hold them in low regard, why haven’t you switched doctors? I cannot tell you what a difference switching MO’s made for me. My first mo was the department head and very knowledgeable but we just didn’t connect. My radiation oncologist gave me a recommendation and it really made a difference. Take care

    PS: And the one thing I always tell you… you are the boss of your health care, not the doctors, husband or anyone else. Take the knowledge you gain and use it to advocate for yourself.

  • pneuma
    pneuma Member Posts: 221
    edited December 2024

    I am not really anxious just really writing what's on my mind. The weird Dr. switcheroo happened before. It was when I had my chemo port surgery. On mychart it says the Dr and has a pic of him, but it's a different one that did my surgery. I was like… OK? Whatever.

    But yeah not happy that it's a male that's going to be there. So I asked my sister to come with me. not even sure if she can come inside during the process.

    Honestly, I will just grin and bear it. they might be good at what they do and I will just make a mess out of nothing. Just hoping for the best always. Pretty sure my radiologist is still female. I will know for sure what this dude's role on my treatment. I will update.

    Regarding the steroid cream. The radiologist did tell me it's a steroid cream. She actually even said that I put it on during treatment which made me do a huh?! in my mind. I probably misunderstand it. Because I am pretty sure you are not supposed to put anything on during treatment. It's even in these forums and the notes they gave me to take home.

    But.. ya like she said it's always up to me what to do and I will definitely not use that steroid cream. LOL. I already am stocked up on aquaphor and petroleum jelly. So ya.

  • ann5631
    ann5631 Member Posts: 23

    talk to your radiologist about the prescription cream. If you have questions about the potential side effects, discuss with the radiologist. For any medication- they need to list any and all potential side effects.
    I was given a prescription cream to use with aquafor and calendula cream I chose to use. The prescription cream I applied once a day and mixed with some aquafor because it was so thick. (This was the doctors instruction). They have had great success with the cream helping prevent radiation burns and skin irritation. It worked for me. I had very little skin irritation.
    so please talk to them about your concerns, before deciding whether or not to use it. You would only be using it for a short time (just during your radiation treatments)

  • pneuma
    pneuma Member Posts: 221

    HI. Thanks. I will. I also will definitely ask her about the thinning of the skin part. I know steroid creams do tend to thin your skin even before this.

    What's the name of the cream they prescribe you? Mine is elocon. SO when do you apply this cream? Thanks!!

  • ann5631
    ann5631 Member Posts: 23
    edited December 2024

    The one they prescribed me was Mometasone (it looks like it also goes by the same name as the one they prescribed you) I did not start using it until after I started radiation. I put it on once a day, just before bed & mixed it with aquafor. The cream was super thick.

    After reading suggestions on here, about 2 weeks before I started radiation I began using calendula cream in the morning on my mastectomy side & put aquafor on before bed. Once I started radiation, I used the calendula cream right after radiation & put it on as I got dressed. I used the Mometesome and aquafor before bed. I usually had radiation In the afternoon, so I would put the calendula cream on in the morning also. It was recommended to not put anything on the area 2-3 hours before radiation. Once I finished radiation, they recommended I use the prescription cream for any other week or so.

    I had some redness my last week or two of radiation, but no itchiness, irritation or pain. I felt like starting the skin care before starting radiation really helped. They checked my skin every week to make sure it all looked ok. It sounds like these days there are not nearly as many skin issues with breast radiation as there were in the past. I think because it is more targeted to specific areas (s )


    hope your radiation goes smoothly. My radiation people were all very kind and caring.

  • pneuma
    pneuma Member Posts: 221

    Thanks so much. Your detailed description on exactly when you use your creams is really helpful. Ya, I got the idea of starting on putting aquaphor and petroleum jelly from the radiation threads here too.

    I looked at calendula cream but it's expensive. LOL. I also have lubriderm. But for now I alternate putting petroleum jelly and aquaphor. I also started putting the oncology cream my brother gave me but my skin reacts to it. SO that's a bummer. It makes my skin red. It's not itchy just my skin turns red. So I stopped using it. It sucks coz it smells good coz it has lavender on it. Oh well.

    Ya you're right we were prescribed the same. Mometasone is the generic name I believe and elocon is the brand name.

    Ya I really hope my radiation goes smoothly, too. My radiation people were also very kind and friendly.

  • pneuma
    pneuma Member Posts: 221

    OK so. Today was my CT-sim. My sister was with me but of course she can't come to the room with me. That sucks. Well I finally know who the dude is. So apparently he's also a radiology onco. And he is subbing for my Dr. Supposedly she is working from home. LOL. OK? So I asked so who is my Dr.? They said she is my Dr. and that the dude was just subbing for her coz she's not there. OH well.

    I did not feel uncomfy coz the 2 girls assisting me were really nice the dude is also nice. I also like that he said my surgery looks like it's healing really well. Although it' s weird that I'm half naked while they're mapping me for my radiation.

    So they just position me and mark my body and even took photos of me half naked, wow. But they said it's coz so they will know how to position me everytime I go for my radiation.

    So now I am marked. They sharpied mark me and just put a clear tape on it. And I have to shower with those tapes and hopes it won't fall off. LOL.

    Then the social worker talked to me. Just asked me what I need or assessing my needs. She even asked if I need help for food. I want to say yes but I know my husband won't like it so I just said my main concern is the billing/paying for my treatments and I mentioned the $4500 ambulance bill I am still disputing. She gave a surprised reaction about it. She said she will see what she can do. So OK. I wonder if I will really hear back from her. I hope so.

    My husband will also put me in his employer's health insurance. So I had to make calls if they accept his insurance and fortunately, they do. One of them that I asked said since it's HMO that I need to have my PCP's referral everytime I have an appointment so that sucks.

    MY next radiation appointment is on the 27th. I was also told that my treatment will be 16+4. I was like I was told it's only 16 so I have to ask my radiologist what the +4 is all about because she specifically told me she won't do boosters on me and it seems like that +4 is a booster so WTF?

  • exbrnxgrl
    exbrnxgrl Member Posts: 5,355

    pneuma,

    What do you mean by your statement that your doctor is “supposedly” working from home? Why would you doubt that? Please remember that doctors are human beings with families, lives, and other things going on beside their job. They are no different than any other person.

    Most HMO’s do require referrals from one’s primary. This is well known and shouldn’t be a surprise. To avoid being upset about your ongoing care, please familiarize yourself with the details of this new plan. Understand what it covers and what restrictions or limitations there may be. It can be complicated but it’s better than getting upset or stressed about things that are well known and expected. Again, feelings are important but knowledge is power.
    Don’t stress about the rads markings. Again, this is a common and known practice and radiologists and rads tech deal with this all the time (in the past, dots were tattooed as markings! Those are permanent). Yes, they took photos/images of you exposed. This may have made you uncomfortable but understand that this is for medical purposes and nothing more.
    pneuma, while it is true that there are many aspects of medical treatment that may leave us feeling powerless, you have far more power in decisions that you seem to believe. You are not the victim and by educating yourself and understanding each process/treatment, etc. you can become stronger, confident and far less stressed. This whole process is not easy nor fun and none of us wanted to have bc and it’s treatments but we also do not have to be victims.

  • pneuma
    pneuma Member Posts: 221
    edited December 2024

    Yeah about the markings, I was surprised how big the sharpie X mark they put on me. Coz I was only aware of it supposed to be a dot. But mine is X mark that are actually big, well medium, I guess. Mine is at the center of my chest below the breasts and another one below it almost at my belly, and I know they also mark me on both sides near between the armpit and top of my breast.

    Ya I don't overthink anymore on feeling exposed. It is what it is. So that means I will be half naked everytime they radiate me.

    Just can't wait to all of these treatments be over and done with and hopefully, God willing, that will be it.

    I hope and pray the radiation will be as good result as my breast surgery. No infection, no complication, and healing well.

    But thanks for confirming that they really do take pics of you exposed like that.

  • exbrnxgrl
    exbrnxgrl Member Posts: 5,355

    “But thanks for confirming that they really do take pics of you exposed like that.”

    Pneuma, please understand that they are not exposing you for any prurient reasons! This is completely driven by medical necessity, period. Though the lack of modesty makes most of us uncomfortable to some extent, it is nothing more than a medical need.
    Regardless of dots or X’s , it’s Sharpie ink and will wash off over time and is not something you need to be concerned about.
    Everything that happens during treatment, whether you understood or were aware of it, is not a catastrophe in the making.

  • harley07
    harley07 Member Posts: 394

    pneuma - wishing you well with radiation. I can understand the awkwardness with the CT sim. Even understanding it was necessary, I felt traumatized by the taking of photos of my naked breasts. Four years later I am still angry by the way I was treated by the radiation oncology team - no compassion or empathy. Just being told I was fat and my breasts are saggy- no shit! I’m in my 60’s, everything is saggy 😀

    Hang in there. We are rooting for you.

  • pneuma
    pneuma Member Posts: 221
    edited December 2024

    THANKS!. Wow. How rude. You're 100% right about them having no compassion or empathy. I am actually shocked they did that to you. what the hell is wrong with them? Mine was the male sub asking me if my nipples are stitched. Yes, yes it is.

    Yeah, when I was being photographed my mind was like whoa… at least the lady was telling me why she is taking pics. but still…

  • pneuma
    pneuma Member Posts: 221

    OK so just got back from my infusion. After I got back from my vacation last night well more like early in the morning today around 1 am. My appointment was 10:45a. So ya. Dead tired.

    First off my airport experience since my diagnosis and chemo port surgery. So on the way to the destination, fortunately, the full body scanner was not working. So no incident there. The only thing was the security asked me to remove my cap. I said - I am bald coz of my chemo. He let me not remove it. But I did lift my cap to let him see some of my baldness. Welp.

    On the way back. They were taking pics of EVERYONE. So I knew I will be asked to remove my cap for the photo. I again said - I am bald coz of my chemo. So he took a pic of me with my cap on. The full body scanner is working. So the lady security was pointing at my chest which I presume they seen my chemo port. So I just said, it's my chemo port. She told me to touch where my chemo port is, then she was holding something with a sponge(?) at the end then rub those in both my hands, then she scanned that spongy thingy in her machine and I saw it says - nothing found or something. And she let me go.

    I made it at my doctor's appointment and I just told my onco that I am concerned all my liver numbers are high. She said kadcyla tend to make liver numbers high so she said they will just monitor it and either not give me the infusion or lower the dose depending on how alarming my liver number. Well, I guess it's not that alarming coz she made me have the kadcyla. Well this time I was not given anything to take. And I also was not even monitored at all after the treatment. It only took 30 minutes infusion.

    On my drive home, the radiation team called me. They wanted me to go earlier. I was supposed to go on the 27th but now they scheduled me for tomorrow morning. I asked what it was so she said it's basically just a continuation of our previous appointment. She said they made it a 2 day appointment instead of 1 day of appointment. OK. They call it picture day. I also will see my radiologist tomorrow. Then she also said after my appointment, they will start my radiation on Monday.

    I also had an echo test. I have to do it every 3 months. Well I told my onco I did not see the result so she said she has seen it and that the pumping of blood looks fine. That, that is basically what they were testing for. OK.

    I also told my onco that I started taking R-ala. Coz based on my research it helps with neuropathy and even radiation treatments. She said she will look into it that it won't affect my kadcyla treatment. She asked what else I am taking so I said I also take vit d3 and women's multivitamins.

    She asked what the effect of ALA well, I just started it so I said I have not seen anything significant yet. I was hoping the neuropathy won't get worst basically.

    ALA is Alpha-lipoic acid. They said R-Alpha-lipoic acid is better and more potent and so that's what I bought.

  • pneuma
    pneuma Member Posts: 221
    edited December 2024

    Ok on my picture day today, my radiologist showed me the image taken and showed where they mapped my planned treatment, not like I can understand the image she's showing me, LOL. But I just asked her why she changed her plans from not boosting me to now +4 boosters. She left the room and says she has to look at her notes and she even asked me if she told me that. LOL. Anyway, she said she probably told me no boosters coz the cut off age for boosters is at 50 yrs. old. And she said it's up to me if I want to do boosters. I said no I don't want boosters.

    I have to tell that to the girls in the radiation room. I forgot oh well, hopefully I won't forget to tell them on Monday. Then I also told the radiologist that there's a blood stain yesterday when I took off my bra so she take a look at it. I also told my onco about it. And they both said they can see a small red spot there. And the radiologist said it will be fine. I said is that OK to do radiation with it and she said yes nothing to worry about. OK. watev.

    Anyway in the radiation room they just made me do breathe in/out and hold my breath and the machine is moving and there's 2 cameras I presume on either side. Anyway after they're done they mark the shit out of my body, LOL. They really went to town sharpee-ing my chest. Great. I'm all marked up. YAY…. NOT!

    OH and my onco's nurse called me to basically say the pharmacist looked up if ALA affects my kadcyla treatment and she found nothing. And she also said there's really not much study on it. So I just said so basically you're saying it's ok for me to take it then? And she said yes.

    Well very well then.

  • pneuma
    pneuma Member Posts: 221

    Alright, today is my 3rd radiation day. I will have 16 treatments total. I refuse the boosters which is another +4. Total is 45.26 gy. Yesterday I didn't have it coz… Christmas. Merry Christmas by the way. And it will be the same on New Year's. And also weekends. I mostly have the same afternoon sked on weekdays but today and tomorrow they change for morning. Oh well.

    So far, all I see is red dots on both my legs. I searched it, and it's one of the SEs. I also basically put aquaphor and the steroid cream they gave me twice a day. I put it on immediately AFTER my treatment AND after I shower. I had to make sure to not use extra hot water when I shower which sucks coz it's cold. The most I can use is warm. But I guess it's better than burning my skin.

  • pneuma
    pneuma Member Posts: 221

    A LITERAL CHRISTmas miracle happened to me! OMG. My $4500 ambulance bill was paid by my insurance finally. Social media does have its advantages. Particularly X formerly known as twitter. I piggybacked someone's tweet with 10 million views his issue was he needed more radiation treatment and united healthcare denies it. Due to the Luigi Mangione situation. united healthcare eventually approved all his treatments and so I tweeted I also am currently on radiation but my problem is the $4500 ambulance bill. My insurance reached out to me right away. And they reprocess my claim and EVERYTHING is paid now!

    Wow. thank you Lord! I hope my other Christmas miracle is that me and my sister will be cured from this dreadful disease. Cancer BE GONE!

  • pneuma
    pneuma Member Posts: 221
    edited January 8

    Today is my 5th radiation treatment. So far so good. I still can wear my bra with no issues. My radiologist nurse told me. That steroid cream they prescribe which was just recent was a game changer. She said since their patients use that cream, their patients are not having severe SEs. I mix it with petroleum jelly. When I told that to my radiologist today she said it's better to use it by itself. I don't know so far my twice a day application is working. And I mix the cream with petroleum jelly. The petroleum jelly I have is with aloe vera and vitamin E. So that also probably also helps.

    I just hope my radiation will be like my breast surgery. No infection, no complication and fast healing.

    Although last night, my left nipple has what looks like a pimple with whitehead. I put neosporin on it and now it looks red, no more pus.

    I showed it to my radiologist today and she is not alarmed so hopefully it will heal with no more pus. Ugh.

  • pneuma
    pneuma Member Posts: 221
    edited January 8

    OK so I had my blood test Monday, after my radiation, I felt woozy, standing up. So I thought, it was because I just had my blood test. When I told the radiologist about that, she also said, it might be from my blood work that same day.

    Well the next day which is today, I felt woozy again, and it's actually kind of longer than yesterday. UGH. Probably because they had me do long breath holds today. I actually asked the lady doing my radiation - what happened to 2 short breath holds?! She said I was doing good. I said ya right that's coz I am afraid to freaking breath even if I want to coz I don't want to damage any of my internal organs. UGH.

    They always tell me I can always breathe if I really have to, the machine will automatically stop but I for some reason don't trust them or the machine. LOL. So I just hold my breathe as long as I have to hold it, damn it.

    The lady even ask me - are you mad? And I was like - well, YA!, kinda. And she said - you'll get over it. Watev.

    Next week will be the last week of my radiation!! YAY!!

    So far, my right breast has a lot of red dots and I can see some dark spots on some places, 1 is somewhat medium size dot. and the other is kinda large area.

    It's one of the SEs. As long as I can still wear my bra I am good, I don't feel any burning sensation or irritation. I think me being disciplined in using warm water while showering also helps. Even though I REALLY want to use super hot shower, but alas, I can't, oh well.

    Then I just checked my blood test today. ALLELUJAH!! Everything are almost all green meaning almost all NORMAL levels….. ALMOST!!!!

    The ONLY abnormal results which are ALL high are:

    glucose - damn, my glucose has been, from the very first time I had my chemo and NEVER went down!

    AST, ALT - ALL high. And these are all liver enzymes and from my research indicates liver damage.

    MPV - low - apparently kidney failure. But my platelets are normal and so is my kidney bloodwork so I'm not really worried about this.

    Great. Kadcyla is destroying my liver. Which honestly I don't even know if I need a HER2+ treatment. I mean I am HER2- now, apparently based on my pathology test after my lumpectomy. I can't.

    Knowing my doctor she will just make me have kadcyla infusion tomorrow.

    I have a better insurance now. I wonder if it's time to change doctors.

    I think I will really say no to hormone therapy. And would also be a good excuse to change doctors in disguise of 'second opinion'.

    Lord have mercy.

    Oh, And..

    HAPPY NEW YEAR TO ALL OF US!

    I wish all of us will be cancer free….

    FOREVER!!

  • maggiehopley
    maggiehopley Member Posts: 153

    Elevated liver values are a very common side effect of Kadcyla. Mine were elevated the entire time. My MO said it was nothing to worry about and they have to be extremely higher than normal for their to be any actual concern. Mine returned to normal within a few months of finishing. Your liver is a very robust organ and can take a lot!

  • pneuma
    pneuma Member Posts: 221
    edited January 9

    Oh ok. Thanks!! good to know. Everything really is back to normal except my glucose and liver numbers. I want to ask you about Arimidex (anastrozole). How was your experience with it. Reading the thread about it here scares me. So is the radiation therapy threads. That I really almost did not want to do radiation. But fortunately, thank God, next week is my last week of radiation treatment, and I really don't have any serious SEs. I can even wear my bra no problem. Hopefully that continues until my last radiation. Although starting last Monday, I have been feeling light headed/woozy after my radiation treatment.

    Now Arimidex (anastrozole) will be my next step. I will start it immediately after my radiation. Is the SEs really that bad?

    THANKS!

  • pneuma
    pneuma Member Posts: 221

    Ok, ugh I hate myself. My last post I said I won't do hormone therapy. Not sure if Arimidex (anastrozole) is hormone therapy or is it kadcyla? I think Arimidex (anastrozole) is called AIs.

    Gosh I will start it after my radiation treatment which is next week. I already bought it. My husband said he paid $0. Thank God.

    Well, I ask my onco do I really have to take it? She said yes because my cancer is hormone+ so it blocks it so the cancer won't grow whatever. I still have to read the flyer about it that they gave me.

    She said I will take it for 5-10 yrs. Well FML. And then I also ask her if I can remove my port after my kadcyla treatment which is this year I believe. And she said yes.

    Oh and she also wants me to take calcium and vit D twice a day. Then I have to schedule a dexa scan. I hate cancer. It's just a never ending treatment. WTF.

    So the calcium and vit. d I can start taking now. And then her nurse called me today, she wanted me to stop taking any supplements I am taking even the R-ala which I barely start taking, LOL. Well that was short lived. Whatever. Basically my onco just wanted me to take whatever she prescribed me nothing else.

    I did ask her if I can still take my multivitamins, pretty sure she said yes, but I guess I need to ask her next time. IF - I don't forget to ask her. I probably should just message her in mychart.

    And that's that. When will these treatments end? I guess never. SHIT.

  • maggiehopley
    maggiehopley Member Posts: 153

    Yes, Arimidex (anastrozole) is hormone therapy. I don't love it, but I am tolerating it. There are some side effects but for me fortunately I don't have all of them at the same time and they come and go. Joint pain and stiffness is the biggest one for me. I have mild hot flashes but that doesn't really bother me. I have had periods of stomach pain but that's not a problem right now. When I first started I had nausea every afternoon, but that's not bothering me right now, either. I can be a bit crankier than I used to be- don't know if that's a side effect or just life.