Lupron with dense dose ACx4 with taxol to follow
I had highly er/pr positive pathology and I have one ovary left that I am sure will come out after treatment. In the meantime, my onc (and I agree) believes shutting down estrogen is the key for me. I am aware that chemo often puts you in menopause at least temporarily. I am 39, have one ovary, get a short period every 23/24 days after having a uterine ablation a few years ago due to sudden excessive bleeding from fibroids (gyn assumed). I lost my other ovary and fallopian tube due to a 5cm endometrioma around the same time I had my ablation. I currently have another complex cyst that has the classic endometrioma look on my remaining ovary. It's been there for almost 2 yrs. It did not light up on my PetScan and has been tracked closely for 2 yrs. Ironically, I didn't have the cyst out b/c I was afraid of early and sudden menopause.
My gut tells me that although I know estrogen comes from my ovary and I have always been a hormonal girl, that much of my estrogen that has caused this is the result of my adrenal gland and constant stress and panic attacks for a number of years.
Thank you for reading and my actual question is, so you think Lupron with this chemo regimen is going to be too much all at once and put my SE's off the charts. I start chemo on April 11th and I think my onc also wants to give me lupron that day. She says if it were her, that is what she would do. Everyone agrees that chemo will not be my most effective tool, but that hormone suppression will be....which is making it difficult for me to feel empowered by doing the chemo. Very interested in knowledge and thoughts from wise and experienced women. Please nothing scary or upsetting right now. I just can't handle it. I felt so confident today leaving my multiple appointments until a young girl in a wheelchair stopped me and asked me if I had been recently diagnosed (she recognized the bag we had with new patient stuff). I reluctantly said yes (very fragile these days) and she proceeded to tell me she had finished treatment and found out just after that she had mets all over and was exploring alternative treatments. She wanted to stay in touch and tell me about them. I felt for her, and I am certainly not against using alternative methods in conjunction with my treatment plan, but her approach and timing left me in panicked tears and instantly took away the comfort and confidence I felt just moments before. Sigh....needed to get all that out. Thanks again everyone.
Comments
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I will tell you that I had Lupron shots with my chemo 9 years ago......I too was highly ER/PR. I can't tell you anything about your possible SE's due to your own situation but I can tell you that I had none whatsoever. My doctor was pretty cutting edge so I think your doctor is on the right track.
I get the panic.....but know this..... my tumor was huge and I had at least 17 nodes positive and I will be at 9 years this May. The treatment is all doable.....it is the panic stuff that is hard to keep in check. We've all been there....it does however get better with time.
Best,
Jacqueline
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Thank you so much, Jacqueline.
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LK, I can't say how it will be, because I did not get lupron during chemo. I did, however, get my period the same day I got my second chemo and that was horrible. That was the last period I ever had. After that the chemo shut down my ovaries, and once I was done with treatment (chemo and rads) I had my ovaries out, in order to go straight on to femara (and skip the tamox, which I was not crazy about as an idea).
It did mean crashing into severe menopause in a very short timeframe, and there were times it was not super-fun exactly, but all in all, it has been doable. I tell everyone to take probiotics and get as much exercise as possible, both seem to help against all the various onslaughts this treatment brings. Walking is fine, doesn't have to be anything streneous, and getting outside is good, not sure why, but fresh air and some light always made me feel better.
The other thing I found helpful was to force myself to breathe and take one thing at a time. It is a long haul, so it helps to pace yourself. I am almost exactly a year out from active treatment, and this week I have been stopped by countless neighbors who wanted to tell me how well I look. In other words, it has taken me a year of healthy eating and exercise to really look like myself again. That may seem like forever, but it really hasn't felt that way, since I started feeling well long before I apparently looked it to others. Also, from one point of view, I think it is downright miraculous that I have come out on the other side looking like myself.
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Thank you, Momine.
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Hi LK, sorry that you have to deal with all this.
Mine is similar to Momine. I was not given Lupron with chemo but I had my ovaries and fallopian tube removed after BC treatment.
I know its disturbing to see other advanced cancer patients. I am dealing with that as well, with one of my friends at an advanced stage.
I get panic attacks too and its ok to take something calming for that. Ask your doctor to prescribe. As some one on this board has said- better living thru pharmaceuticals!
my best wishes to you.
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Thank you, Natalie. My biggest concern is that the SE will be overwhelming. I am all about shutting down the estrogen at this point....I even question how much benefit chemo will have for my case. It just seems like so much all at once. I am very afraid and all I want to do is hang out with my 14 and 11 year old and not deal with any of this. I feel great this morning. Finally getting back to myself after surgery and can't fathom starting treatment that will surely make me sick. So frustrated.
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LK, try not to imagine the worst. I had a lot of treatment and for a long time, i.e. started chemo in June and finished with rads the following February, hyster in March. So that makes about 9 months of something bad being done to me on a regular basis. I was tired and there were times I felt like complete crap, don't get me wrong. I am not going to try to kid you that it was some kind of breeze. But I never puked, never got an infection and never had any serious SEs or complications from treatment. I walked daily. Sometimes just 300 yards, mind you, but often for hours. I also made an effort to get up, get dressed, put on a pretty scarf and some make-up or whatever to bolster my morale.
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Okay, M. That helps. Thank you for being kind to me.
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Let us know how you fare with it all.
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I will. Thought I would also mention that the plan after chemo is to put me on something having to do with insulin and pathways....thinking maybe it's the diabetes drug that starts with an M.... Metaformin? Name was never said, but I am making an educated guess. Interestingly, my blood sugar read a bit high sometimes and I gained A LOT of weight with pregnancies (I am not normally overweight) and had a 10 lb. 4oz. baby and an 11lb. baby. I did not have gestational diabetes, but was considered borderline, as one nurse described me as "spilling sugar" at one point. Tall, lean, strong people and big babies run in our families, so I never thought much of it. I also made enough breast milk for a small nation. I seriously had crazy amounts of milk and my breasts could have been a side show at the circus. Amazingly, 3mths and then 6mths out from my pregnancies at ages 25 and 28, I was lean and back to normal again.
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Oh, and I breastfed for 15months and 9 months. My daughter started biting and making it all a game and weaned herself. Son would have nursed until prom...
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LK, interesting. I finally got my onc to admit that my blood sugar is higher than you would expect for someone with my stats. I also had an 11-lbs baby and I was also considered borderline during the pregnancy.
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Wow. That is definitely interesting. I was surprised when I mentioned my thoughts on my adrenal gland working overtime to my oncologist and she said she didn't know much about the adrenal gland....I know she comes highly recommended, but I that gave me pause.
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For what it is worth
I could not take tamoxifen, but was still having my periods when dx. Had a lumpectomy, chemo, then radiation--- I had my last period in February and started femara and lupron in June (I asked for some time). Chemo definitely put me into menopause. I don't think I had too too many side effects from lupron other than vaginal dryness and some fuzzyhead--but that may have also been chemo and/or femara. I had monthly lupron shots and things settled down after about 6 months. I went off lupron this past June,at my request, so I could see if I was indeed menopausal. So far, so good, although I think it is supposed to be a year-- at which point I will also be off of the femara--
I think you can always try something, and if it is too hard on you, you can stop......
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Hi there. Few things:)
My Stats are simiar to yours... I was prego at diagnosis. I did chemo then had ovarys removed asap. I chose not to do the shots b-c what if they didn't work? I wanted to mke sure I as ripping all estrogen out of my system. I was highly er and positive. So I went into menopause and I felt great.I started exercising very heavliy and I can honestly say I feel better now the I ever dd in my ife. Being in menopase evened me out. It's way easier now then it was when I was having periods. With that said I exercise twice a day everyday and eat ubber healthy.
I too had thoid issues and high anxiety. I had massive panick attacks for years leading UP to my dianois. Funny after menopause DESPITE the tremendous stress of being prego agoin through chemo I never ever had one. I often wondered about that.
Lately I started to have them again but I worked myself up into a complete state of crazyness. I started on anti anxety meds and it went away.
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I have read some of what you've written, Pure and we have definitely been through similar things, too. Thanks for adding this.
Also, thanks to momand2kids!
Glad I started this as it's making me feel like we can help each other. -
Nice to find this thread! My story is a little interesting and i'd like to share! I was 42 at diagnosis in 8/11. Had my last period in October 2011 after my first infusion of TC (out of 6). Started Tamoxifen in March 2012 after my BMX. Fast forward to my appointment with my MO in January 2013. She says that she wants to check my estradial and FSH because it had been almost 16 months since I've had a period and she wanted to switch me to Arimidex, if the blood work indicated that i was now post menopausal. We both were under the impression that I was probably not post menopausal because I had been having some intermittent menstrual-like cramps for a few months. Well, the blood work came back the next day and I was, indeed, post menopausal. My estradial was less than 5 and FSH was 58. My MO wanted to me to switch over to Arimidex. I was hesitant to do so for various reasons that I have discussed on other threads on this board and don't feel like going into again now. But mainly, I figured "if it ain't broke, don't fix it". Obviously, the TC x 6 and the Tamoxifen were keeping my estrogen levels low and there was no reason to switch me over to Arimidex because Tami was working and I could stay on it for 3 years before making the switch, as that was the "standard of care", blah, blah, blah. Well, sure enough, within 5 weeks my period returned!!! The Arimidex apparently got my ovaries stimulated. I was really dissapointed.
At that point, I told her that I wanted to start ovarian supression. She was on-board with the decision. I had my first Lupron shot on March 14th.....I had a period a few weeks later and I will have my second shot on Thursday. This time, they will give me one that will last three months apparently?
I am very hesitant to continue taking these shots, but I'm afraid to go "all out" and have my ovaries removed. Some days I feel really good and other days I feel really, really bad and I can only attribute this to the lack of estrogen in my body. I used to be a pretty active woman, running, walking, energetic and I am no longer that person!. Im not having horrible side effects though, so I'm wondering if removing my ovaries would really be a big deal for me? My thoughts are that I do the shots for 6 months or so, and then make a decision?? Deep down though I feel like its my best shot at not getting a recurrence......
I'm still pretty young at 44 and I told my friend the other day I don't feel 44 any more. My body feels like I'm 55 instead. Stiff, slow to move, and mushy now......I hate it!!! Im also finding it really hard to lose any weight. I would just like to lose 5 lbs and it seems nearly impossible.
So, the plan now is to continue with Lupron, probably get myself into that postmenopausal range again, and then my MO wants to switch me to Arimidex. Not sure what I think. I may stick with the Tami, until I make a decision about a BSO. We shall see. Oh, I did have a baseline DExA scan before I started the AI and it was good. My MO put me on extra calcium and Vitamin D to keep those bones strong.
Anyway, thanks for letting me vent...... sorry for rambling!
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LK, would you mind sharing your glucose numbers? My onc does not want me to start metformin, and I have not pushed for it, since my glucose does seem to be going down with diet and exercise. But I am interested in information on this.
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LK...I started on Metformin when done with treatment through my primary care/internist. There is a study going on for Metformin and cancer, but I didn't want to do that and chance getting the placebo. I have metabolic syndrome, and everything was high except for the blood sugar but it was creeping up over the years. I too had a high birthweight baby. There is lots of diabetes in my family. The Metformin is making it easier to keep my weight stable, and to me it makes a lot of sense that high insulin levels could create an environment we as cancer survivors don't want.
I also wanted to say that chemo is hard but doable. You will have a bad week and then a good week, most likely. I did a lot of living life in that good week! The key is as Momine said--walking. Absolutely, positively, one must do this during chemo to circulate the red blood cells that remain more efficiently. They told me even if you can only walk around in the house, do so for 5 minutes every hour during the day. Then get yourself walking longer distances. I did 20 minutes or more on good days, not alot but consistent! I had to take a lot of antinausea meds so I was tired, tired, tired. The walking really helped. -
It's great to share all this information and connect.
Momine, I don't know my numbers...only that a few times over the years it has been mentioned to me to keep an eye on it. I will definitely share anything I do find out. -
LK, oh, ok. If you find out, I would appreciate the info. I have copies of all my test results and I get fasting glucose as well as an A1c test, every 3 months.
At DX my fasting glucose was in the high 90s, which is within normal, but the really high end of normal. Considering that I had a normal BMI, good cholesterol numbers and profile and was physically active, it made little sense to me. Now my fasting glucose has come down some, but the last A1c was still hovering right on the border of pre-diabetes.
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Okay. I will ask about this. Chemo starts Thursday, so I am very overwhelmed.
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I was very highly positive ER/PR and premenopause at diagnosis (I was 38). Didn't start hormonals during chemo but after all chemo and rads were done. My period came back after chemo, so I now do tamox and zoladex (like lupron). I had hot flashes on chemo. I have hot flashes now (they were worse on chemo), but they were all the result of low estrogen. I don't think taking chemo and antihormonals together will intensify the effect; it's the ovarian suppression either way.
I can't speak for other SE interactions. My joints are creaky and I walk like my feet are made of lead. But, I stay active anyway, and I think that helps a lot. You can totally do this! Your story will be your story, so try not to listen too much to the scary stuff.
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Thank you, Maxine!
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LK, we'll be thinking of you Thursday.
About seeing other patients, I saw myself yesterday. Meaning, I came across a pic DH had taken of me in my hospital room right after my BMX. Because I had chemo before (and after) surgery, I am bald as an egg. I look like your classic cancer victim, completely terrible and probably terrifying to others. Thing is, I actually felt OK. A few hours later I was up, walking around, using my laptop, doing some homework etc. Point being that it often looks far worse to others than it really is.
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LKSHER....so understand the fear of treatment, but what Momine shared about excerise is important to help you through. Also agree with taking it one day at a time. You will still hang out with your kids through treatment..it will be even more precious to you...as you will have good days! I made it a point to plan simple things to do with my kids on my good days....it gave me something to look forward to( I am a planner) and to keep life as normal for my kids...yes you're in treatment, but you also need to focus on living too!!!
Please keep coming here and asking questions as you go through treatment...losing your hair can be hard...have you decided about how you want to handle that such as getting a wig or hats? Also you might want to get beanies to wear at night to keep your head warm for after you lose hair! It does grow back and remind yourself of that when you grieve losing your hair!
I didn't do the Lipton shots...I had ovaries out so can't comment on that. But am also highly PR+ER+ with low grade... And have concerns with how effective chemotherapy was for me...but all we can do is fight with what we have and believe is best.
I have a wonderful woman about your age in my life, her name is Amy Pomykal( you can google it and read her story). She is so inspiring to me as she was diagnosed with brain cancer in 2002. She was given just months to live...she was 32. She fought and searched for ways to fight. She did a trail at Duke along with holistic herbs, supplements and diet changes. Her word is "BELIEVE"! She believed in her choices for treatment and believed she'd live. She has the word believe all over her home. She is still going strong 11 years later with two precious children (6&4yrs). She is very real, funny and lives knowing the dormant cancer in her brain can change, but that today she is here and still living while believing she'll be for a longtime to come. She says giving up sugar was harder than chemotherapy...she loves brownie crust!! I hope her story gives you strength.
Will be thinking and praying for you on Thursday. Believe each treatment is killing cancer cells. -
Thank you, Hopefour. I am working on getting a wig, but we will see whether I wear that or hats and scarves. My daughter asked me to wear a wig. She has just turned 11.
Do you keep ice on your nails throughout the entire infusion? I am confused about how the ice to the nails works. Toes and fingers? How long? Suck ice chips the entire time? For both AC and T?
Did you all do Claritin for the neulasta?
Did you get new or special makeup?
I have read everything, but still feel unprepared and overwhelmed. -
The preparatory materials in the chemo section are awesomely helpful, as you've probably already seen.
Re: icing--I did ask to have ice in my mouth during the first infusion of A/C, specifically during the Adriamycin. I then dropped it after that. I didn't seem to have any mouth issues. I did not ice my finger nails during Taxol. I don't think nails are affected by A/C. It would have been very difficult for me to get ice where I was being treated.
I did the Claritin with Neulasta and had NO problems whatsoever.
I did the American Cancer Society's Look Good, Feel Better to get the free makeup, but it really wasn't anything better than what I had. In fact, a lot of it had parabens so I didn't feel comfortable using it after research. I needed a good eyebrow pencil and good eyeliner by mid chemo. Eyebrows and lashes were among the last to fall out for me. But at one point, I was down to 2 brow hairs total, so I cut them down to the skin. Just looked better to me. I was able to give my eyes some definition with pencil liner. I did not have problems with sullen skin or lack of coloring.
The most helpful things in my opinion: stool softeners (the pills did not work for me--I would suggest Miralax), ginger supplements (if allowed--used for 3 days in advance), hard candies (I did not like the taste of the flushing of the IV, and some women get metallic taste from the chemo), Claritin as you mentioned. From the doctor, definitely get your anti-nausea meds, fill them, and if they're not enough, call immediately. You might ask for some Ativan and/or something to help you sleep. I also was given Ativan with my treatment in case I was getting stressed or having high blood pressure. Walk, walk, walk!
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Wow. Thanks, Mary. Very helpful.
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LKSHER- I don't think you need to ice fingers and toes during AC but yes for Taxol. I iced for taxol and had NO issues with neuropathy. I don't know if that was just an individual thing or the ice, but you should try to do it. My hospital had these awesome freezer pack booties and mittens. It is COLD and uncomfortable, but worth it. AC was not fun, but everyone reacts differently. I definitely eventually had a metallic taste in my mouth after a couple treatments. Because you should be drinking LOTS of water, I would use those flavor packets (Propel, Crystal Light, etc.) to make it palatable. Like Mary, I switched to makeup without parabens. There is a lot of advice on brands on these boards.
Try to stay as active as possible. It helps loads. Wishing you the best tomorrow. You can do this, lady! Just keep taking one step at a time. We are here for you!
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