Starting Chemo October 2018
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I had my port removed today, such a relief to have that thing out of my neck. It has been a long journey to this point. I’m so relieved to be here!
Doris
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Hey all, Checking in. It's been awhile since I posted here so I thought I'd post here too for those not on social media and for those following the thread. Welp, lupron DID put me into menopause for a short while, after I had gotten a 3 month dose of it and was ready to start Ibrance and Aromasin. BUT, MO checked my levels again just to make sure and low and behold, Ovaries are already trying to wake up again. I'd have to wait until October to get another shot and MO is not wanting to wait any longer for ovaries to cooperate. So, out come the ovaries in a couple weeks. Then FOR SURE I'll be able to start the Ibrance etc. I did get my first Zometa infusion tho. I felt fine for the rest of the day afterwards but when I woke up the next day I felt like I got hit by a mack truck, the general ill feeling, fatigue and aches and pains like I had during chemo, it was a rough day. I woke up today tho much perkier, not like I was before the infusion but much better.
I've been blogging and podcasting a bit, to try and help with emotions and help me cope. It helps to some extent, but I still have those days nothing helps. Quite honestly, I find this progression of mine to be frustrating, I feel I've become a whiner rather than a supporter. I don't want to leave my fellow warriors in the dust as I deal with all this, but have been having trouble balancing a bit, between emotionally trying to cope but at the same time help others to cope. Do unto others as you would have them do onto you, its what I'm going for. Cancer can be a lonely experience and I never want anyone to feel alone, I know I've had moments of feeling like that and it honestly sucks.
The one big positive is Notgivingup and I will get to meet when I go into the city to get my ovary removal consult. Woo hoo
Doris, I hope your doing well and your neuropathy has let up. Just to let you and Annie know. My neuropathy has stopped and I no longer need the gabapentin. I was concerned for the longest time the damage was permanent, but about 3 weeks ago it let up. It's been great! I so hope the same will happen for the both of you too
Scars were found in my lungs in my initial scans at first diagnosis and are still there with my progression to the bones. Plus lungs were inflamed. I was told chemo can cause inflammation in the lungs for quite some time after chemo as the body heals. It's just something to watch that's all. My initial diagnosis cancer anniversary passed on the 30th of last month, cannot believe its been a yr. Alot has happened in that time, but I'm still here. Some days are definitely better than others and some days I don't know how I'm going to get through them but i do, I hope everyone out there is doing okay. Hugggsssss
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After spending my birthday in the chair for HP, I started Aromasin today. I am trying to be optimistic about the SE's but am afraid I might grow horns or something.
Rabbit - you are never far from my thoughts. You have so much going on - my heart just aches for you.
Dori - I am still dealing with neuropathy. I started a B vitamin but it set off a bout of cystitis. I am going to try it again next week at a lesser dose. I think it did help.
Fritz - I reread your earlier post about feeling blue. I am really fighting this right now. I am doing better than I have done in months, yet I feel so low. I'll probably feel better soon - the roller coaster will start to climb soon.
Annie
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Good to hear from you Rabbit. I’m approaching the anniversary of my diagnosis, September 5, 2018. I am still having severe neuropathy in my feet & soreness in my fingertips. I’m 4 months out from the end of my chemo.
Husband wants me to see a pulmonary physician about the lung spots. My oncologist says she doesn’t know what’s in my lung. This upsets my husband as he feels she should know what the spot is or at least have some idea. She came highly recommended & I feel confident with her..
Rabbit I think about you often, I would have a hard time coping I think. God bless you.
Doris
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Just checking in to see how everyone is doing. I see my RO tomorrow for a check up and get cleared to do the dreaded one year after mammogram. I started on Aromasin. So far, so good. I'm having some stiffness in the morning, which aggravates the neuropathy in my feet. But DH and I are walking every morning - we're up to a mile and 1/4! We had started doing this last Spring a year ago and gotten up to 2 miles. I had just told him I felt the best I had in years. Then the BC hammer dropped
Wonder how long it takes after you start taking the pills that you see a difference in estrogen levels. Since I'm 11 years out from menopause, maybe I don't have much estrogen. One year since diagnosis next Wednesday. That day is also my wedding anniversary. We've decided to take a trip and just concentrate on the wedding anniversary. I am not a cussing person and particularly hate the F bomb - but I would really like to say that to cancer!
Annie
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hey all
checking in again. welp, my consult for ovary removal is the 16th of September....that's the soonest I could get. Not happy about the wait but what can you do? Just stringing sentences together is hard for me these days. I'm tired of spending all my time on the phone. I've let my MO know whats going on so if she's not happy with the timeline hopefully some strings can be pulled. In the meantime I wait and try to keep busy mentally and physically the best I can. About 4 or 5 days after the Zometa infusion I felt better, hopefully its doing its job. Still working out in the lawn tho more slowly, having to break it up over a few days but still getting it done. Ambien is still working its magic so i can sleep tho, this past saturday I was able to sleep in AND take a nap on my own...I was like WHOA...I took a nap on my own, that was both exciting and scary at the same time! Sleep, something i had no problem with at all before cancer, even through hard struggles is still something I wrestle with. Without Ambien i wouldn't very much at all. Violet the kitten is keeping me entertained - keeps wanting me to play fetch with her, even in the night, I wake up to about 5 or 6 fuzzy mouses on me, I think she is trying to hint at something. Annie, thinking of you on the 1 yr anniversary mammogram - here's hoping for a quick squeeze and a green light
My BC diagnosis is a few days shy of wedding anniversary too so i get that feeling - enjoy trip with hubby and make new memories! I'm not a cussing person either myself and I too am not fond of that particular 4 letter word but I would be lying if i hadn't said that to cancer under my breath, i think we all have honestly. Doris, sometimes imaging can only show so much, is your MO open to a biopsy to check it out if there is enough there to biopsy? Can't hurt to ask and might put minds at ease. Thinking of you as you approach anniversary of when life changed.
I know we are getting around the time more of us are approaching the 1 year anniversary. Sometimes just having things to look forward to help getting through each day. Press toward making happy memories and living life beyond breast cancer, enjoy reaching another holiday, another birthday. For me, I look forward to the 16th not only for my consult but when I get to hug someone I've been on this journey a long time with, Notgivingup, my lady in red
Take care ladies, love to you all
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Rabbit, oncologist feels there nothing to biopsy, it’s sort of misty looking, nothing solid. So I wait for it to change or get better.
I hope something gives with you, hate that you have to wait so long to get ovaries removed. I had one removed in 1992 when I had my hysterectomy. The second one just shriveled up over the years
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Good Morning Warriors!
I hope you all are doing well. I have recently started a clinical trial. It will only last about 8 months. I had to get a breast mri, lab work, a biopsy on the non cancer breast (dense tissue), and get an injection. It's the injection that is being studied. They hope it will make breast tissue less dense which is a factor for breast cancer.
I am really looking forward to meeting Rabbit in a couple of weeks! I am actually excited!! Love to you all!
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My precious dog Colby died Friday, he was there for me during chemo, surgery, and radiation, I needed him and I’m so sad, he was 13, maybe his job was done. He made this terrible year bearable
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Newfromny,
I am very sorry for your loss. I am glad he was able to be a comfort for you while going through your treatments. Hugs and prayers for you.
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Newfromny - I am so sorry. I bet that little fellow was a great comfort to you.
Rabbit - I hope your appointment gets moved up. I wish we could all be there for you but I am so glad Notgivingup will be there. Ambien has been helping me to sleep quiet often lately. You know, there's not a lot to do at 2 in the morning.
Pommom - Neurpathy any better? Some days I think mine is, then it hits me like a bolt of lightning - like tonight when I am sitting up because laying down is just too painful.
I think I overdid it during our trip. I seem to forget I had cancer and didn't take care of myself - not drinking and eating lots of protein - stayed out to long in the sun. I have to say, it was wonderful. I felt optimistic for the first time in a year. Then, this dizziness that has me on the floor started and man, did I remember that my new normal can not be ignored. My MO is stopping the AI for a week to see if it is causing this awful dizziness. Maybe I just overdid and didn't eat and drink right. But dang it, I am not going to let this crap slap me down again.
Have any of you done a bone density scan? Mine was today and I was suppose to have a mammogram tomorrow but the machine is down so it is reschedule for next Wednesday. On Friday I will have an EGD. Will this madness ever stop???
Love you guys and pray for you daily
Annie
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Doris - hoping its just scar tissue or chemo irritation, that can happen. Enjoy some time for yourself, you've come so far!
Smooth sailing ovary removal surgery in my future hopefully soon, I know some of the ladies on here have had it done recently and did very well, so I'm optimistic about it!Newfromny - i'm so sorry for your loss, I'm glad he was able to be there for you in all you went through this past year. I too lost a pet not long ago, My 15 yr old siamese to bone cancer. A couple months ago we added a kitten to our menagerie once we had grieved a bit, her craziness has been a great distraction for me.
Annie - Yep, I've had a bone density test. Easiest thing I've ever done besides the bone scan. Love the open machine. AI's can cause bone loss etc, so they like to have a baseline. I have found I need to eat red meat of some sort at least twice a week, otherwise I'm really tired. I was tired today, had some steak on a salad and some cold water, perked right up. Dunno why, but it was an easy fix. I bought a pretty decorative water bottle to carry with me in one of the pockets of my purse. We throw so much at our bodies with this disease no wonder it rebels alittle bit
Hang in there lady, PM or facebook IM box is always open Patrice
Know your out there dealing with this prehistoric mountain lion too - never forgotten, always loved Still hanging in there, its all you can do sometimes, life's reigns don't belong to us and so we are along for the ride. I'm just hoping during my ride I will look beyond myself and circumstances, even when hard, to continue to be supportive of the ladies who have come to mean so much to me
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Annie my neuropathy isn't any better. I'm starting to use a cane once in a while to keep me upright. I, too am having lots of dizzy spells. If I try to stand still is when I get them, so I try to walk instead of standing in one place. Right now I feel like one of those Chinese women who had the bound feet.
Rabbit the scar is getting a little better painwise, just seems to take awhile to heal.. I have had the bone density test also. Oncologist wants to give me Reclast, but wants to hear from the dentist first. Well I was at the dentist today & last week, not good. I have to have teeth pulled, filled & root canaled. All done before the Reclast. Cancer the gift that keeps on giving
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I can walk, but toward evening, my feet drive me crazy. The gabapentin (thanks Rabbit) helps.
Rabbit - on the 16th, you will have a consult? Will they schedule the surgery then?
EDG tomorrow - they want to access my port for meds. Makes me nervous for anyone but my chemo nurses to do this.
Annie
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Annie, night is when my feet feel the worst. My husband massages them every night at bedtime. It does help somewhat to help me sleep.
I’ve had others access my port, especially when I had an aortic Doppler done. They get someone who knows how to do the port
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EDG done - the port stick was more painful than at the chemo center but it sure beats getting stuck two or three times - I have such bad veins!
They found some redness and irritation in my stomach and did a biopsy for infection NOT cancer. When they used the word biopsy, my husband turned white and my BP jumped through the roof. The dr jumped in to reassure us that there was no sign of cancer. They also dilated my esophagus that has narrowed. Added another pill to the arsenal - I swear I rattle when I walk.
Last night I watched bloopers from the Carol Burnett show. Laughed until I cried. It sure helped the anxiety.
Annie
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Annie, I know how you feel about all those pills. I think I’m taking about 12 pills a day which my max used to be three. I absolutely hate to take pills, ugh!
Love the old Carol Burnett Show, sure was funny.
Doris
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I’m sorry for your loss of your dog. Cry, love and know they loved you everyday.
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pom mom- how awesome is that to get your feet massaged every night, I'm sorry for the why, but glad to see you get that extra pampering
Annie, I had such a good laugh when you said you rattle when you walk. Lol. Yes, surgery date should be the week after consult date or very soon there after,will really really be pushing for quick date. The day after consult I'm in the chair for 2nd Zometa infusion. Those take about 20 mins. I'll be down for the count for 3 days after that infusion, felt so sick last time. I am so very glad the doctors explained the why, my ears woulda perked up at the word biopsy too.
Speaking of Carol Burnett, I heard when someone asked her what labor pains felt like, she said to take your bottom lip and pull it over your head. LOL
1 week left Notgivingup
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Hi All. I hope everyone is doing well. I have been very busy canning. I have been keeping myself busy with things here. I started a clinical trial on August 29th and seem to be doing well with it.
Rabbit I am so looking forward to seeing you! One week!
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So, life still seems to be on a roller coaster. My one year diagnosis date is coming up and I have been thinking (dwelling) on things again. Two weeks ago my MO gave me my final HP date. Part of me was thrilled to be down to the last 3 and part of me was scared to think that it will be done. I will be starting Nerlynx after I finish - so still not really done. I am worried about new SE's and more brain fog....
I have also been stressed out due to my daughters health. We have had her in the ER twice in the last 3 weeks. Friday was scary. She took a turn for the worse and was treated for sepsis. She responded well to the meds and is currently doing ok, but we still have no clue as to what is causing the health issues....
We had two deaths in the family within 28 hours. One making national news and one quietly rippling through in the after shock of the first. My 15 year old son decided we were awful and ran away two nights later and I had an infusion the next morning. Needless to say, my self-care is about non existent. I haven't been drinking enough fluids or getting enough sleep. For me, that means inflammation. I have swollen ankles/legs and feel like crap. I am hoping that is the reason that my TM's have jumped. They are still in the normal range but went from low to high in one cycle. Uggggghhh....... if only Calgon could take me away!
Notgivingup and Rabbit I am excited that you two will meet!! Take lots of pics and have a ton of laughs!!
Newfromny I am so sorry about your fur baby! I am so glad you had him to get you through the rough stuff.
Thinking about all of you and so grateful to know you are here!
F
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Frmthahart - How are you still standing?! Bless your heart - I hope and pray things get better. Can you tell me why you are starting Nerlynx? I haven't done any research on it and really don't won't my MO to spring it on me. I just found out today during my HP infusion that I have to continue HP until March of next year. Yuck.
My MO switched me from Arimidex to Femara. Hopefully, I won't feel like I'm on the tilt-a-whirl at the fair. I have my mammogram tomorrow afternoon. I am more nervous than I thought I would be.
Rabbit and Notgivingup - post lots of pics!! How I wish we all could be there.
You all are the reason that I have made it this far.
Annie
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Hi Annie, did they say why the HP should continue until March, also they may also switch me to Femara did they say what SEs will come with that ? It’s always something
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Frmthahart- All I can offer you is a gentle hug and say girl I feel you. Life crap on top of cancer crap never stops, its the same on this end. Its times like these when i wish we were all close to one another to help each other through the day to day bullshit. My PM box or IM box is always open. Cancer and Life are 2 cruel beasts we must contend with. One beast is enough, but when you have a mountain lion chasing you on top of it, it makes it all the more hard. My heart is crushed for you and we are here for you.
Annie, so glad you've switched, you were not having fun at all on the Arimidex, here's to no SE with Femara! Let us know how the mammogram goes tomorrow, will be thinking of you!
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I know some of you are readers. We just finished the best book - Where the Crawdads Sing by Delia Owens. I haven't enjoyed a book in a while and this was a great one to get back to reading.
Annie
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Hi All. On Wednesday, September 11th, it was one year since I heard "you have cancer". Words none of ever wanted to hear. I'm not dwelling on that. Simply by getting that diagnose it made life interesting. It didn't allow me to stop and feel sorry for myself. It brought me to meet all of you. I learned that myself and all of you are stronger than we thought. We have been together every step of this journey. I can't imagine not having you all through this. I love you all.
I will make sure to hug Rabbit extra long and hard for all of you on Monday. I wish we were all able to get together for a huge group hug.
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I received my cancer diagnosis a year ago September 13. It sure has been a long arduous journey for me, but I came out in the end with the cancer beat for now!
It has been a very welcome thing to find this site & to meet all of you fine women. It has been a pleasure knowing all of you.
Notgivingup I envy your meeting up with Rabbit. Give her a big hug from me. Also, here’s one for you. {{{hugs}}} ❤️🌹
Doris
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Tomorrow is the big day!! I get happy just thinking about the two of you meeting. How I wish we were all going to be there. I do think a little of each one of us will be there. We are wanting the best for our Rabbit!!
Rabbit - please let us know what the dr say. We are praying!!
There have not been a lot of good things about this disease - but you all are one of the best things that happen to me. My life is richer and sweeter with you all in it.
Annie
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I can hardly wait to hear how the meeting goes! Y'all will be hugging for a long time to get all our hugs covered
Rabbit, prayers being lifted up for good news from the docs. We will all be there in spirit!F
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