Starting Chemo October 2018
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Well 2 weeks of waiting - what hell that was truly and I've finally gotten some answers. My cancer is confined to my bones only. Pelvic bones, 2 ribs, my sternum, and my upper and lower back. No organ involvement right now and nothing in my brain. Tumors are all less than 1cm in size. I am amazed how it decides to drop a little turd here and a little turd there, it can't just pick a place. Ugh, so annoying. I am not in that place of accepting this new diagnosis yet. I am still in the denial phase a bit, tho, the little jabs of pain I feel every now and then let me know its real. Have my next Lupron shot on the 11th. She wants me to continue them for right now until we get a long term plan in place. Right now all my imaging is being sent to the regional hospital near me and the radiologists are going to look them over and pick where they want to biopsy. Biopsy is being done to genomically (sp) test everything and also to make sure the cancer is still hormone receptor positive. I'm hoping they pick a non painful spot! That will happen in the next couple weeks and then I meet up with with my MO in 2 weeks to go over the plan. In the meantime she still wants me to get that lupron shot on the 11th because we both highly suspect its still hormone receptor positive as my original tumor was 100% ER and 100% PR....I think if it comes back hormone positive too I will push to have a hysterectomy both to help starve the cancer and because of finding out recently about my mom's advanced uterine/ovarian cancer. I discussed that with my MO and she was on board. I've developed post chemo neuropathy in my upper legs. Stabbing shooting pain like my nerves are on fire. Hurts sitting, laying down..pisses me off really. MO prescribed me something to calm the nerves down so looking forward to that. Popped a couple tylenol tonight. Feel like I am on information overload and developed an annoying tension/stress headache. Don't I sound like the the absolute epitome of sunshine and roses? What a complainer I am right now!
I am treating myself to a cordless weedwhacker this weekend. Yes, I've used a corded weedwhacker with a huge extension cord for 10 yrs. No more, this girl is going cordless! Hubby and I are going to eat out at a sit down place too. Haven't been to one of those in months and before that it had been yrs. Driving around to the second window please had been the choice often as its cheaper, but i dunno, fast food certainly isn't cheap where I am - some places its 8 or 9 bucks for a combo, your almost better off eating at a sit down.
Fritz - Congrats on finishing girl!! You did it! Now your just in non hormonal phase, woo hoo! I get the being on edge thing. Every phone call, text message etc, your waiting for the shoe to drop. Hoping the "radiant" skin heals for you soon! You got through every single treatment, be proud of yourself, you went through alot in a short period of time and your on the other side now. Here's to you living out your future now, cancer free
Annie, thinking of you and rads, I wish I was going through it with you.
Doris, Wow about the tornado! Hope you were able to get back on track with rads. My simulation when I was supposed to have rads didn't include a nose clamp, probably cuz mine was going to be on right side. Your very brave, I don't know how I'd fair with something clamped to my nose!
Trisha. Frmthahart, NewfromNY thank you so much for the well wishes, thoughts and prayers
I want to write more but think my head, eyes and fingers need a break. Will probably finish up what I wanted to say tomorrow
Love to all of you!!
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P.S. I don't want to ever forgot to say how thankful I am for each of you and your support. You have no idea what it means to me. I have been feeling bad lately that in my throws of feeling sorry for myself I feel I have been neglecting all of you in your struggles. I am might be dealing with some crap but so are all of you. I will try and lend as much support as I can to you ladies as you wrap up active treatment. We have been through so much together, hell in fact and I know I wouldn't be able to muster the strength I have the past few weeks had it not been for the nuggets of gold you have left for me here and on facebook. I never want to neglect to be appreciative of that encouragement as you are all going through so much yourselves. I think of all you often. I pray everyday a cure for all of us will be found. Traveling this journey is not easy no matter where you are in the journey or what stage you are. It's all hard. A cure MUST be found.
Love to you all
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Rabbit, I am SO glad to hear that it is confined to bone only. I think everything you’ve planned with your doctors sounds like an excellent plan. I’ll be keeping my fingers and toes crossed that your receptor status hasn’t changed so that the hormone therapy can help kick those cells to the curb. I know you’re still in the thick of it and of course it’s hard to accept, but you are so strong!! Treat yourself to that weedwacker and dinner out. You more than deserve it! Thank you for updating us all. Continued prayers and hugs!
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Alright, I'm up again, ready to finish what I was going to say. I feel like all those little tumors in my bones are giving me the proverbial micro middle finger for trying to kill them. Little bastards. I am really hoping everything stays hormone positive, I have more options that way. I kinda want to have my cake and eat it too in the way I want quantity and quality of life. But quality of life ultimately is the most important to me. I don't want to be miserable. And for the most part right now outside the neuropathy which is now being treated I feel pretty good. I don't want to speak too soon but after the lupron shot soon after the pain I was feeling in my back went down by alot...so I'm hoping its because cancer cells got starved. Gonna tell my nurse on the 11th to hit me with their best shot on my ass and fire away another lupron, woo!
My MO said any treatment from now on will be oral for a long time because we are going for the least toxic options as we are going for the long term now - explaining they hit it hard in the beginning so it doesn't come back and now with stage 4 its about making smart least toxic effective choices and that sounds good to me. I told her I felt stupid for getting my port out early and she says that doesn't matter like she explained its all going to be oral from this point for a long while. Not liking having to have a bone biopsy, I keep imagining a drill and smoke for some reason - probably not good images to be thinking about right now. All I know is, knock me out and knock me out good before hand. Fritz
Thank you! I am definitely going to get myself that weedwhacker, odd thing to make one happy, but I just like seeing a manicured lawn, makes me happy for some reason. Plus using a push mower etc is good exercise. It's been good free physical therapy after my mastectomy. Have full range of motion after only doing that a short time. I thoroughly am going to enjoy sitting down for a meal with the hubby. Dealing with crap is so much better with distractions. Patrice - I think of you often and wonder often how your doing battling the same prehistoric saber tooth mountain lion I am.
April - thank you for all your messages and encouragement and checking in on me. You too Annie
I really hope a cure is found then we can collectively gather those stinking chairs and burn them in a massive bonfire...I hate those chairs...
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Rabbit - Just saw your post. I have had granddaughters and we stay off phones and computers to play with them. My heart is with you. It sounds like your MO is going to fight hard for you. I am so sorry you are having to go through this, but I know you will fight this mountain lion with everything you've got. Please know you are being prayed for daily - several times a day. I just hate that you are having to go through this. It just sucks! But we will fight with you and stand by you. Lots of love and hugs for you and your husband.
Annie
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Good Morning!
Today starts my boosts. I only have 4 to do. My RO is really impressed with how my skin has held up. He called it a "light sunburn". I told him that I have been using Miaderm-L (Amazon) and pure aloe vera gel (Target). I also have been hydrating well. I have a trip to visit my family next Thursday. I am taking Amtrak. My niece graduated high school and I want to surprise her at her party. Only my parents know that I am coming in. It will be a short trip, but I will see family that I haven't seen since August 2018.
Rabbit I hope you are finding some peace. I am continuing to pray for you.
Antigone my twin, I hope you are doing well. Check in to let me know how you are doing.
I hope everyone is doing well. Love to all!
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hey ladies!
Tuesday at 11am is my CT Scan guided bone biopsy to sternum. Here's to hoping everything is still hormone positive! I am being heavily sedated for the procedure for which I am grateful Anxious to get my treatment plan in place, Had my 2nd Lupron shot on the 11th, no side effects for me just like Zoladex in the beginning except getting a really heavy period for a few days that's it. Emotionally I'm doing slightly better I've had about a month to let things settle a bit. Mowing my lawn and keeping busy with projects around the house. The weather has been amazing and I've been enjoying it immensely. Witnessed mama raccoon move her kits a few days ago- every year she has her babies in a giant maple tree with a big hole in it in our front yard. She moves them across the fence to the neighbors yard to another den she has somewhere else. I know it's moving day when i hear their trademark chirps coming from the front yard. This year because I heard a huge racket and saw 3 little bodies and mom crawling down the tree. One year she had 5! Annie- I hope your doing well with rads, I keep thinking of you and hoping its going well! Hubby joked when I was going to do rads that we could marinate me before hand. lol. Soak up and savor LOTS of lollie and pop time
Notgivingup- you must have 1 or two rads left. Congrats girl
2 protocols down AND rads, as Patrice would say. "You gangsta!" Take care ladies, Love to all of you. Keep fighting. Keep living life!
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Hello to everybody! I hope everyone is doing OK. I am feeling more like my old self. I have begun to paint again, something I haven' t done since October. 20 more rads to go. I am slightly red with some soreness. Nothing to bad.
Rabbit - sounds like you are staying busy. DH does all our mowing. We have ten acres with three cleared. He is very particular about how it is mowed. I just mow in a circle til it's done. Apparently, that is not how it's done! I take care of the flowers. Know that we are thinking and praying for you on Tuesday.
Fritz - you finished rads, right? Feeling OK? Are you doing a hormone suppressor?
Patrice - I think of you often.
Notgiviningup - Are you finished with rads? What's next?
Doris - how are you?
Love you guys!!
Annie
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Annie60, I’m still here awaiting the call to start radiation. Two weeks ago I was marked on my torso for radiation. Haven’t heard a word from them since.
I have three appointments next week with several doctors & some tests, so I’m keeping busy
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Annie
I will finish rads Monday morning. After rads I will be doing a clinical trial with aspirin. I believe my MO is considering possibly one more trial. She really wants to try to prevent a recurrence. If I didn't do a clinical trial, I would be done with active treatment.
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Rabbit, I mowed my lawn for the first time since being married (first time ever with a push mower) this past week because my husband hurt his foot. I’m sure I did it very inefficiently, but it felt good to look at it once I finished!
Annie, I finished rads a little over a week ago. There was no fanfare or bell ringing. Just hugs from the nurses, and my kids brought in drawings and a cookie cake for everyone. My armpit is almost completely healed after peeling off in thick chunks. It wasn’t pretty. My breast and chest is a little pink and dry, but did not burn too badly at all. I still have stickers on where they did the boosts because I’m afraid to pull skin off with them so I’m waiting until my skin is 100% healed, or the stickers fall off on their own.
Notgivingup congrats on finishing rads tomorrow!! Keep us posted on the clinical trials. I asked my MO to look into some for me to get into, but he hasn’t gotten back to me yet.
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I finished radiation! It's been a long road, but I did it. I don't know what I would have done without you ladies! You have been with me every step of the way and I so appreciate it. Thank you! Now that I am no longer in active treatment, maybe I can get a few things done around here that has been neglected the last 9 months.
I hope you all are doing well. Keep in touch.
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Notgivingup, Congrats on finishing Rads! I hope you plan something fun to celebrate!
Fritz, I hope you are recovering well!
Annie, YEA! to getting back to the things you enjoy!
Rabbit, I am so glad that you were able to get your lawn done! I will be thinking of you and hope all goes well with the biopsy.
I am headed up to the mountains for a few days with the family. It will be nice to be unplugged from everything for a while. I hope it helps get me out of this crazy twilight zone I seem to be in. Everyone seems to think I should be back to normal now and since I am not I keep waiting for the other shoe to fall. My OT thinks I am just pushing to hard to fast with things, but the kiddos don't think I am moving fast enough - especially for all the summer things they want to do. I just try to keep putting one foot in front of the other.
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I got a letter from insurance today saying that the request for radiation was approved. I have to get it done between Today until August 24. So I guess I will be getting a call from radiation center soon. This is really going to put a crimp in my summer!
So glad some of you are finished with your rads & healing has begun.
Doris
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well ladies I am at home resting in the recliner from my biopsy to my sternum. It was very quick and did not hurt, just felt alittle pressure from him pressing down as he got his sample. The spot biopsied was the part of the bone directly in between the breasts. Have alittle piece of gauze over it with a waterproof barrier over that, that comes off in 24hrs. I felt so good and relaxed once they got me into the wheeling bed again, I had a little nap next to the CT Scan before they moved me to recovery. They had put warmed blankets on me and I felt great! 30 mins in recovery and I was sent home!
Fritz- you got a taste of my thrill! It's great to see the finished product
glad your healing up, your poor skin. Notgivingup our lady in red, our warrior in pink, our go big or go home girl
So proud of you!! Go enjoy some much deserved freedom!Annie, glad skin is holding up for you and even more glad your painting again! Keep slaying girl you can do it!!
Doris, I agree summer isn't the ideal time to start rads, hope you can get it started and over and done with soon!
Frmthahart- enjoy that escape to the mountains. A change of scenery is never a bad thing
I hear ya, one foot in front of the other. Patience is something we all are earning a PHd in it seems. Will see MO on 28th to go over everything in the meantime I'm backburnering it. I am having to learn to do that with this whole cancer thing especially now. Not easy and not always possible, but I need to learn and practice makes perfect
Take care ladies!!
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Missing you all! Except for the neuropathy, I am doing pretty well. Rads are moving on - 14 left with 5 of them being boost. HP not causing problems. Fatigue is still an ever present, unwanted guest. My granddaughter, who is 7, will have open heart surgery on July 11th. She had her first at two weeks. She and her sister are the light in our life. We will have the 4 year old while her sister is in the hospital. I hope my energy hold up!
I hope you all are doing well - living life as well as you can.
Annie
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Hi All!
I am currently on my way home from my quick trip to see my family. What a few days. Friday night I had dinner with a friend I have known since first grade, Saturday was my niece's high school graduation party, Sunday I had breakfast with a friend and lunch with my brother and sister-in-law. It was good to see everyone, but I am tired. I took Amtrak, so at least I can rest and relax on my home. I hope everyone is doing well. Btw, my skin has been doing great. It is peeling, but I am grateful that it was only a light sunburn.
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im feeling pretty good, appetite is getting better, but I look like a refugee from all the weight loss. My sense of taste is not perfect, mouth is overwhelmingly salty. I have had three rads so far, 27 to go.
My only real problem is the neuropathy of my feet, they haven’t improved at all.
Doris
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Today I went from being a little red to very red. I have been pretty uncomfortable today. Advil helped. I have 13 to go - 8 of what I am doing now - the 5 areas, and then 5 boost to the cancer site.
Doris - Is holding your breath hard? My feet are still driving me crazy. I can't sleep some nights the pain is so bad. DH bought me Aspercreme with Lidocaine and it has been a blessing. Numbs me enough so I can get to sleep. We also started Mall walking, The heat and horse flies prevent us from walking in our yard and the mall is on the way home. This seems to be helping.
Rabbit - We continue to pray for you daily and will say extra prayers for Friday. I hope your yard is looking wonderful!
Notgivingup - Sounds like you had a good and busy trip. Was fatigue a problem for you during rads?
I hope the rest of our group is doing well.
Annie
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Annie fatigue was towards late afternoon for me. I either took a nap or pushed through it because I stuff going on.
I started getting restless legs so my friend suggested magnesium. I took it and it seemed to help. It also seemed to help sime with the neuropathy in my feet. They aren't as painful. I don't know if the magnesium is helping with that, but I'm not complaining.
I plan to start walking again. I need to get the weight I gain during the last 10 months off, plus a lot more. I had started really walking and dieting before this cancer journey. I am ready to take control of my weight and physical fitness. My goal is to walk at least 2 miles a day to start.
I hope everyone is living the best life you can at what ever phase of this journey you are in.
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Updating here for those not on the facebook group and for those who might be following the thread.
I got my biopsy results today. 95%ER and 95%PR and Her2- (0)....just like my original tumor, nothing changed, woo hoo!
My mets will be treated with Ibrance and Aromasin combo oral medication. I will also continue to get my lupron which will be every 3 months and along with a shot of Xgeva quarterly working to yearly for prevention of fracture and to strengthen my bones. I told my MO at my appointment today I'm getting loaded up. I truly will be the guinea pig on all this crap lol. I'm avoiding the chemo chair having estrogen positive mets, I was on cloud 9 with that news! It was a complete answer to prayer, I thank God for sparing me the chemo chair for now. Treating things with a pill and a couple shots sounds good to me. I celebrated with Taco Bell on the way home and a Baja Blast Freeze - you have to live a little bit dealing with this BS.
After my 3rd lupron shot on the 9th of July I will have my hormone levels checked and then once given the go ahead will start the Aromasin while I wait to receive the Ibrance ( there is a whole process for getting that stuff).
Annie and Doris, ask about gabapentin for the neuropathy pain. I am on that currently for the neuropathy in my legs that started shortly after finishing chemo, makes a world of difference- the pain was horrible for me from that so I can imagine what you two are dealing with, dont want my ladies suffering, please ask!
Notgivingup- I am with you on wanting to take control of diet and fitness. I am working heavily in my yard. Mowing with non self propelled push mower and a weedwhacker burns calories for sure and gets me sweating and active. I also walk a hilly up and down mile every day. Diet wise I am trying to do intermittent fasting where I only eat twice a day and a small snack between the hours of Noon and 7. Still eating the things I like just cutting the portion a tad and upping the veggies. I am fully convinced, my go big or go home warrior you truly can do anything including these new goals you've set for yourself, chemo slayer!
I am fully convinced God uses all circumstances even bad or difficult ones to bring about good. Each one of you is a gift from God to me, you have all blessed me abundantly and helped me grow as a person. Cancer is a terrible beast, but it brought me to you all, I can't imagine not knowing you all. I have seen such strength and love in this group, and its been good to see on a road that's often so dark and in a world where one's eyes are immediately hyper aware of how much suffering is going on all around us once life gives us the proverbial slap in the face with cancer.
I love you all. Keep on Keeping on
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Forgot to post a traditional funny
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Hi All. It been pretty quiet on here. Just checking to see how everyone is doing. I hope you all are trying to get back to living life. Please check in to let me know how you are doing.
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Don’t know where else to vent, trying to get back to normal, but still have SE from herceptin/perjeta every 3 weeks and still have fatigue, husband/daughter just not supportive anymore,think I should be fine and are resentful if I’m not 100%. I’m worried about reoccurrence or upcoming scans but they think I’m fine. How does everyone deal with this? I feel I no longer have anyone to talk to.
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Newfromny- I am sorry that you are having se. I completely understand the fear of recurrence. That is a big fear of mine. People seem to think that once we are finished with chemo, surgery, and radiation, that we should be back to our old self as if we never had cancer. I believe that we can get back to routines, but not back to who we were. Cancer has forever changed us. Not just physically, but emotionally and mentally. Please know that coming here to vent is a good thing. You are not alone.
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Newfromny - what kind of SE's are you having? I think that the HP has made the neuropathy worse in my feet. I don't know if it is causing fatigue because I am just finishing rads - 2 more boost to go out of a total of 33.
When I told my husband, who could not have been more supportive, about my fears of this dreaded disease coming back and that every time I had a new pain, I was afraid, he asked did I need to "see" someone, meaning a therapist. This really ticked me off. My fears are real and justified. He wants to get the rest of the HP behind us and then return to normal, put this behind us. Seriously?! There is no going back to what was normal. So from here on out, only you all and my MO and NP will hear my fears.
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I also think the neuropathy in my feet is worse but they tell me it’s left over from chemo, I have stomach issues all the time and the fatigue continues, I finished radiation on June 10 so I don’t think it’s that. I also get flushed if I’m out in the heat too long, I need to take breaks inside. Our fears are real , in a second everything could change. Our loved ones just find it hardto acknowledge that.
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I totally understand, Newfromny! I just started to get neuropathy in my right hand. When I told my husband looked at me like I was crazy. I am so ready to be done with the herceptin/Perjeta... end of October the treatments should be done. The hot flashes from the zoladex/Aromasin are epic. It’s gonna be a long hot/sweaty 5 years🥵
Stay strong! Any of you in the Midwest/Northeast try to stay cool this weekend.
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I think we ladies need to vent more than we realize. The side effects of treatment and/or long term treatments we endure have ever lasting consequences, I sometimes think those in our lives forget that. I think that's why we gather here or seek others out in our situation, because we want to feel like we are not crazy for how we feel and not just how we feel physically, tho alot of us will agree we've had unpleasant changes there. We are forever changed mentally and emotionally. Forever. Fear is a new foe that we wrestle with everyday. Sometimes we conquer it, sometimes it conquers us. There is no going back to our lives as they once were and our loved ones need to know that. We have changed and we need to talk. We have to talk sometimes, its the only thing we can do to feel we have a grasp on reality, that we are not imagining these things and to have our deeply rooted fears validated.
NewfromNY - vent here anytime you need to. I check back here often to see how everyone is doing. I think we all kinda do, waiting for someone to take the lead and say "I need to vent". Consider asking your MO from some relief from the neuropathy. I asked mine and I was prescribed gabapentin. We started low and upped it until I got relief. This has helped SO MUCH in terms of quality of life. I had peripheral neuropathy in my legs. Sitting, Standing, Laying down...I couldn't get comfortable and it was so irritating it actually made me so grouchy. Now I feel such relief, no more burning pain and numbness.
Neuropathy during chemo and post chemo is common. Another "blessing" from breast cancer.
My husband while still supportive and loving as ever I find is disappearing into his music room alittle more often. He looks at me knowing how serious the situation is and is afraid. I know its taking a toll on him mentally and physically. He told me about a week ago while he was working he felt his whole left side of his body go completely numb. He got checked out and it wasn't a stroke..but it scared him and scared me none the less, so I try to be understanding that my partner/advocate and caregiver in this needs a break just like i do sometimes. He'd really like for this to all go away, just like me. But its not an option, treatment ends when there are no more options....or there are no more options I'm willing to take. You are justified in your fears Annie and the BS we all go through is real. Sometimes I wish as part of our treatment plan it included an informational course for loved ones that would flat out say something like "What *Insert name here* is going through now will forever change her, she will never be the same, she will live with fear everyday, this is how you can support her".
This weekend was a scorcher....heat index of 110 at some points...lived in the AC with hubby all weekend, only ventured out to let the dog do his business and then immediately back inside to the arms of hubby to snuggle when he took breaks from writing music. As we snuggled he pretended like he was trying to mess up my micro pixie locks and then for a moment got serious and said to me "Our lives are falling apart, I don't know what to do...I love you". He tickled me until I couldn't breathe from laughter and then went and made us some chicken cheesesteaks for lunch, made in his signature way that I adore. I realized then the men in our lives want to take away what we're going through, and sometimes will make suggestions on things that might help you ( "reach out to your BC support ladies..."make an appointment with that oncology counselor") because they feel they can't, even tho obviously the thing that will help you the most is understanding and to be acknowledged by them not another person. A good elbowing is needed to remind them sometimes..
Realizing have said all this I know I sorta represent and I am in the place ladies fear to be.
Somedays I feel okay, some days I feel like a Jack Jack loaded diaper. Tomorrow I am to start round 1 of Ibrance hopefully. Had testing done at last MO appointment a week or so ago to check to make sure my ovaries are shut down so I can start taking it and Aromasin so tomorrow I find out whether being on 3 months of lupron has done that yet. Otherwise ovaries need to come out. Nervous. Ibrance has a progression free shelf life averaging about 36 months, some have only had 6 months to a yr on it some have gone over 40 months and still counting. Ibrance is an newer oral chemotherapy. I will be on it until it fails. 3 weeks on, 1 week off. We shall see whats in the cards for me. July 31st will mark the 1 yr cancer anniversary for me....when I got the call my biopsy was positive for cancer. 8:44am on a Monday morning I got the call from my OBGYN personally, I knew then it wasn't good. 3 days later was hubby and I's wedding anniversary....This yr will mark 17 yrs together. My hope and prayer is to get to 20 yrs...at the very least
Take care ladies, I'm poking around often, if anyone needs an ear, I'm there
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Rabbit Thank you so much for your thoughtful response of what we are all going through, your husband sounds wonderful as is mine and others here. But they are also going through their own way of dealing with this terrible disease and sometimes they break down. I know they are so afraid of our future and they just want to go back to the way things used to be. But we can’t and they can’t . I guess sometimes they need to take a little break, we had a better weekend, even in the terrible heat. I think of you often and pray your treatments are successful . You are such an inspiration to all of us here with your positive attitude.
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