Starting chemo April 2019
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It's been quiet here. I guess everyone is getting on with their lives.
I finished rads yesterday. My skin held up pretty well. Just some peeling and weepy spots at the very end. I'm thrilled to be done!
I get a two-week break and then start tamoxifen. My first mammo post treatment will be in March.
I made friends with several rads patients. One man was getting treated for prostrate cancer and his wife had done rads earlier in the year for BC. She just had her first mammo after treatment and it wasn't good so she's having a biopsy. Ugh, I just felt so badly for them, esp if her cancer has returned so quickly.
Hope everyone is doing well. Ladies on tamoxifen or AI, would love to hear how you are doing on them, your SE, etc.
Hugs! MM
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Hi MM! I finished rads almost 3 weeks ago and have healed up completely. I see my plastic surgeon today to discuss reconstruction!! I started Tamoxifen about 1 1/2 weeks ago and so far I have not had any side effects. I have heard it takes a little while for the SEs to kick in. Hoping they are minor!
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Hey all,
I am on examestane for 3 1/2 weeks. I started it 2 weeks after diep flap surgery. Things I learned that helps alot since after a week i felt the side effects heavily.
I was taking it in the morning at first and after about 8 days, i was past nauseous.. so, afternoon with food, problem solved! It really helped ALOT.
Not being able to exercise because of surgery made bones and joints very unhappy.. add an estrogen blocker and I was locked up and painful. I did easy circling of all joints, massaging and rubbing moving as much as possible. Now I got the all clear to move a lot more and use weights, feeling better quickly. Even though it hasn’t been a month of this medicine, a few changes for me made a HUGE difference. When they give the all clear for full on exercise, yay!
Ill be on this for 10 years so I hope this will continue to help. I take vitamin D3 and in Jan will discuss protecting the bones from estrogen blocker.
My orthopedic doc said” keep close eye on your bones. In case you need more than a vitamin.”
Everyone is so different but I still wanted to post this.
Peace,
Dorene
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Hi Sparkle and twelvestring!
I am two weeks out from rads and am almost healed. I see my RO tomorrow for follow up.
I started tamoxifen today. Took it in the morning without food and it gave me a headache. I may need to adjust the time I take it.
I'm taking D3 too. And Alpha Lipoic Acid to protect my liver. Ugh I'm so worried about the residual effects all the combined treatments will have on my body 😬
Good to hear from y'all! MM
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Hi all,
It has been quiet but I hope that is a good sign that everyone is doing well. I finished radiation in September and was doing really good until the week after and then my whole breast peeled and had some seepy areas and it took probably a month for everything to be totally back to normal. Positive note is that shedding my skin reduced the look of my scar. Gotta find a positive where you can!
I take Arimidex daily and once per month I have a Zolodex injection to shut down my ovaries. I also have to get an infusion of Zoldronic acid 2x per year which is to help with bone density. I have not had many side effects that I wasn't already having from being in menapause from chemo. I just got my Zolodex injection last week and I have been very tired. I have to make note about that for next month to see if that is causing it. Prior to getting it I was feeling like my stamina was really good but since getting it I have been a tired mess.
I did have an appointment to discuss having my ovaries taken out instead of going monthly for the injections to shut them down. I am on the fence about it. Doing injections for two years sounds like a long time and I have to go to the infusion center for them and it is hard going back there and seeing people in midst of treatment but scared of another surgery. I still have to have surgery on my left breast to make it match my reconstructed one.
Today is my one year anniversary of getting the call to come back for more imaging after my annual mammogram. Wow, what a year it has been!
Take care eveyone!!
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Hi Bam!
I’m coming up on my year anniversary of the bad screening mammo too. Sometimes I still can’t believe it, and do not know how I made it through the worst of times so far.
Bam I meant to ask you, did you have a bone density test? Is that why you are on the Zoldronic acid? Also what led to you getting Zolodex? Hormone level tests? Is this done through your MO or another doc on your team? My tumor was 86% ER+, does this make one a candidate for oophorectomy? Genetic testing was negative. Nobody has mentioned any of this to me, so I’ll ask about it. I think you and I are around the same age and had similar cancers. I was premenopausal at DX.
I see my GYN tomorrow and haven’t seen her since DX. I see a new lifestyle PCP on Tuesday. I will be making major changes to my diet and exercise routine. I have scheduled a colonoscopy before year end since I met my out of pocket.
I’ve been on tamoxifen for about a week now. No official SE yet but I swear I am already thicker in the middle. Grrrr
My energy is getting better but WBC is still not back into normal range yet. I still need to get my flu shot.
Hugs to all! MM
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I still have just a little bit of hair on my head as I hopefully have my 5th Taxol session tomorrow. My hair is pretty thin at this point but what is left was trimmed to about and inch last Friday. Prior to chemo my natural hair was medium brown with gray (white) around my temples and a little bit more but predominantly brown. My husband and I both noticed that what was left of my hair was mostly white and that the brown hair had fallen out. Then this evening we both noticed that my hair has changed color and is turning dark again. It is pretty wild! Did anyone else experience this?
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Hi Ms. Maire,
I did have a bone density test to get a baseline before starting the Zoladex and Arimidex. The Zoldronic acid is to help prevent bone weakening and my MO says it gives another 1-2% reduction in recurrence. I will have another bone density test in 2 years. I am taking Citracal and D3 to help with the bone loss too.
Before diagnosis I was premenopausal at 53. My cancer was 99% er positive. My MO has me doing the Zoladex and said we will plan on doing it for two years and then stop to see if I have naturally gone into menopause. I actually am not sure of his reasoning of doing that versus Tamoxifen but assume it was in part due to my cancer being so highly er positive.
I had my appointment to discuss the oophorectomy and I am on the fence. I was not crazy about the GYN that I saw and would probably prefer my GYN who delivered my children but the one I saw the other day is affiliated with the same hospital system as my cancer team and I could potentially have the oophorectomy at the same time as my plastic surgery on my other breast to have it better match my reconstructed one. Part of my problem with the oophorectomy is that I dread more surgery.
Are you going to talk to the GYN about oophorectomy? If you could, let me/us know what they say.
Have a great week everyone
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Hi Ladies,
Bam, I was wondering about you being on the Arimidex as well. I was premenopausal also. I am 52. Once I started chemo my periods stopped, I was so thankful. My Onc said if they started again she would give me lupron (sp) shots monthly to prevent it. But I have not had any periods since chemo ended. I started taking tamoxifen about a month age. I am getting my first refill today. I am not sure of the percentage of my er/pr. I will have to look back at my paperwork to see if it says. I don't want any extra estrogen floating around feeding cancer cells!!!
My Onc said there really was no reason to have my ovaries out. My Gyn. offered to do an oophrectomy and said it would be a preventative so it would be one less thing to worry about. I am on the fence also about having another surgery. But I have a friend who just had it done and she said it was super easy recovery. She was out of work for a week only because the dr. made her stay out that long. Just no heavy lifting allowed.
So far no side affects from the tamoxifen that I have noticed. I feel so much better everyday from the chemo and the radiation I am not sure if I would realize I am not 100%
But I am not really having hot flashes, muscle/joint aches, or any of the other major side affects noted. Hope everyone has a great week!!
Debbie
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Bam and Sparkle - thanks for sharing your details.
My MO said we start with tamoxifen and if I go one year from my last chemo treatment without a period then he will test hormones and do bone density at that time. If I am in full menopause then he will move me to AI instead of tamoxifen. I guess then we'd discuss Zoldronic acid for bones.
I am having my current hormone levels checked with my GYN. I guess if there is anything concerning we can discuss removing the ovaries, but like you girls I don't want more surgery unless it would mean significant reduction in recurrence.
My aunt had BC in her early 60s and she was menopausal but her MO from MD Anderson put her on tamoxifen. So it sounds like it's not just about the menopause status with some MOs.
Let's keep each other posted if anyone moves forward with ovary removal.
Hugs to all! MM
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Thanks for your information Sparkle and Marie. I will let you know if I decide to do anything with the ovaries. I did ask the GYN that I met with if there was any difference in recurrence rate between having your ovaries out versus zoladex and lupron. She said she did not know of any studies on that and feels it would be a small difference. I have not had the chance to search about that myself though. I don't meet with my MO for a while but intend to ask him as well.
I do have a mammogram next week on my other breast and then meet with my surgical oncologist afterwards. I think moving forward I see either the MO or surgical oncologist every three months so they keep a close eye on you in the beginning.
Take care everyone!
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Happy Thanksgiving Chemo sisters‼️
I'm a little emo today. Tomorrow marks one year of getting the screening mammo.
I have so much to be thankful for. I pray for healing and health for all dealing with cancer and major illnesses. 🙏🏻
MM
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Boy oh Boy MsMarie you were not kidding. Yesterday was my 1 year anniversary of mammogram that initiated my cancer journey. I was a bundle of anxiety yesterday returning for my 1 year repeat screening mammogram and was surprised as to the degree of emotions I was experiencing. By the time they called me back for the scan I was practically in tears.
Then the waiting started....
Fortunately my results were posted yesterday evening and all is clear. whew!
Happy Holidays chemo sisters. I wish you all the very best in the coming year.
Ro
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Oh Ro I'm so sorry. But happy you got the all clear‼️ Scanxiety is definitely a thing for us after what we've been through.
I am not scheduled until March for my mammo. I wanted it during 2019 due to already meeting my max out of pocket, lol. Idk why the MO/RO don't need it until March. Instead I scheduled my colonoscopy 😳for this Friday.
So I am on the mission to lose 20 lbs. My PCP said this would reduce estrogen perhaps as much as the tamoxifen. Yes the adipose tissue has to go. I am increasing my exercise and cutting way back on meat, dairy and gluten. I am only drinking water, coffee, tea and small quantities of oat milk. The tamoxifen has other ideas and is fighting me for every pound. I am down 3 Lbs despite my foe and a couple of holiday cheat meals.
I had my vitamin D levels checked and even with taking a supplement for several months I was barely at the bottom of normal range. So I had to double my supplement and add Vit K. Also my TSH was a little higher than normal range, perhaps due to Chemo. They are monitoring. I don't want anymore meds.
I hope we can all enjoy our holidays more this year. ((Hugs)) MM
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Hi All,
I had my mammogram in November and it was extremely stressful. They read them right away so you sit and wait to get the results. I got called back from more imaging of a dense area in my breast and I was about in tears. All was fine but after that I was ready to have my left breast taken off to avoid that insane stress.
I have my surgery on my left breast for symmetry on February 4th and looking forward to that. I have decided not to have my ovaries out.
I got my first hair cut the other day! My hair is growing well on the sides and back but not so fast on the top so I had the sides and back trimmed up. My stylist said that for some reason the top grows slower. I have a wave to it now which is difficult to deal with due to my hair being short but may be okay once it grows some more. I am still wearing my wig when I am out though but hope in another 6 weeks or so I can go without.
I hope everyone had a nice holiday and I pray that everyone's 2020 is much less eventful than our 2019 has been!
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Hi Bam!
I haven't posted in awhile, trying to keep my mind focused on moving forward and not the hell of a year that 2019 was. Looking back I can't believe that I had cancer (have cancer? I think it is had until I hear different!) and what we all went through...but of course when it is time to follow up, the stress comes back and makes it very real. I am glad to hear your scans were good in the end! Sorry that you had to go through the worry with more images, that is my biggest fear right now too.
I am waiting on the appointment for my follow up mammogram and MRI which will both be in January. Fingers crossed. I did see my surgeon and she thinks that everything looks good, but only the scans will tell...
I have had three haircuts and it very true that the hair grows faster on the sides and back than it does on the top. It was not a good look for me, so I go about every 4 weeks and have the sides and back trimmed until the top can grow. The top is getting longer now though and it is looking like I meant to cut my hair this short. I have also been colouring my hair because I was not in love with the grey/white hair that came in. The first colour was not as good as the rest have been, but I am happy with the colour now.
I was at a conference and a colleague that I have not seen in a year asked me what made me decide to cut off all my hair. It was the best compliment really.
Happy New Year everyone! Let's put 2019 behind us.
Laura
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Hi Bam and Staying Positive,
It's been exactly a year for me too. Just had my mammo and was all clear. The 15 minute wait to hear that seemed like 10 hours! Bam, I'm so sorry you went through that! I was sitting there during that wait thinking of how I would react if they did call me back. I'd be shaking like a leaf and probably faint! Luckily I am starting 2020 in much better shape and happy to put 2019 behind me. I had a CT scan of my chest in October because of a lung issue that turned out to be sarcoidosis which is benign. My docs wanted to make sure the bc hadn't spread to my lungs and had a broncoscopy. It was all very stressful but the scan was clear then too. I will have to have a CT scan every year in addition to my mammo. My hair was straight and highlighted blonde before all this and came back dark and super curly but its the new me. I've had it cut twice and keeping it short. My hairdresser, who works with other cancer survivors, said she doubts my hair will ever straighten out since the curl is so tight. I don't want to get back into coloring it until the gray gets to be too much. I turn 60 this year and so far so good. Happy New Year everyone!
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Hi Ladies. It was one year ago today that I got that dreaded news 😞. First cancerversary (confirmed from biopsy results).
In many ways, I feel so much stronger than I was a year ago. In other ways, I still can't believe I was ever diagnosed.
But I am so happy to be here and I try to live my life only in the present.
Sorry for all the mammo and scan scares. I guess that will just be part of the rest of our journey. I will have first post treatment mammo in March.
ILOVERMONT, you look beautiful! My hair was dark blonde before chemo and I highlighted it. Now it's a yucky salt and pepper look. I still wear my wig. I am going to get it cut and colored in Feb. Right now I look like a mad scientist! It's growing much more on the sides and back and less on top, like others have reported.
I've been on tamoxifen for 2 months now. Biggest complaints are my stall in weight loss, and night sweats. At least I haven't gained weight.
I hope more ladies will pop in from time to time and give an update. I read a bunch on some of the other boards but I haven't been posting much except for our board.
((Hugs)) MM
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Hi ladies, January 9th was my one year cancerversary. I feel I’m doing well considering all things. I have not had my post treatment mammo yet. That will be February, I think. I do have a large knot where my lumpectomy scar is. That concerns me a bit. March will be one year from my 2nd lumpectomy. At last appointment a few months ago, the BS thought it was a seroma and it would go down, it hasn’t. It’s sensitive sometimes. I’m doing ok with the AI. I have the usualSE as the other ladies, fatigue and stiffness.
I have the chemo curls. Prior to BC, I had straight, fine blonde highlighted hair. Have been blonde for 30+ years. Now my hair is dark and short curly. I look in the mirror and don’t see myself. Most people when they see me say, wow you look just like your mom. She had short wavy hair. So haven’t decided if I will go back to blonde yet. Retired and really should be watching the budget. It’s been nice to not have that added expense.
All in all, I’m doing ok. Just gotta keep moving forward. Best wishes to all of us for clear scans and little SE from our treatments. Go ladies 💪🏻!
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beautiful picture Debra! We have the exact cancerversary.
Right smack in the middle of AC chemo last year was my 20th wedding anniversary, and then my 50th Bd during Taxol. We've booked NYC for June 2020 so we can finally celebrate them properly. We will also be celebrating my oldest son's HS graduation. Starting to feel normal again. 🎉
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A year. What a hell of a year. As I look back on it, it's almost as if it never happened, like it happened to someone else. Still so surreal. I always thought I was the healthiest person. No daily prescriptions for any maladies, I quit smoking 20 years ago, ate a Mediterranean diet, drank in moderation, took exercise seriously and always got good sleep. Then WHAM!
My 'cancerversary' is today, MLK Day. I will never forget this day last January and hearing those words 'invasive ductile carcinoma' coming through the phone from a worker bee up at the hospital who's job it was to tell women if they had cancer or not. I felt sorry for her but I was also angry that she wasn't able to tell me anything more than that. On top of the five days I had waited since my biopsy, I now had to wait to see a surgeon to get some answers. Questions were flooding my brain and the fear of the unknown was taking hold. I spent the next 48 hours telling my family and close friends what was going on as matter-of-factly as I could but, alone with my thoughts, I couldn't help picturing my own demise.
I used to say that was THE WORST day of my life but I look at it differently now. I realize now it was the luckiest day of my life. I learned from my surgeon it was just by chance my bc had been found at all and that it was treatable because it had been caught early. I had had my mammogram on December 31st and got called back on January 2nd, 2019. I was 6 months late getting it. If I had gotten it that previous June, they might not have seen anything. If I had skipped altogether and waited a full year, it would have been a very different story because it turned out to be an aggressive type. So now my mammogram was and forever will be on every December 31st. I just had it and was able to get my results before I left. ALL CLEAR! But let me tell you the 20 minutes it took the radiologist to read my films seemed like an eternity! I was sitting there trying to imagine how I would react if they needed to look closer. I probably would shake like a leaf and cry like a baby. Luckily, I was able to walk out of there without shedding a tear and feeling light as a feather.
If you asked me if my getting cancer has changed me I would say I'm still the same person as I was before getting diagnosed but a much stronger version. My relationships are closer than ever and I have even more of them thanks to cancer putting some amazing people in my path. I was never one for sweating the small stuff but even the things that used to bother me roll off my back now. I know it sounds cliche but now I'm living more in the present. I'm here and I'm not going anywhere soon!I hope all of you are doing as well. Onward!
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Hey, guys, just popping in to let everyone know what's up with moi. Got my latest CT results yesterday -- still good. No cancer. I'll do another in June and my onco says if that one's good, I can move to getting CTs biannually instead of quarterly. In the meantime, I'm back to writing and doing all my normal stuff. Walking. Crafting. Cooking all the things, LOL. My hair still hasn't grown in enough to do anything with yet. I look like a troll doll with hair spiking up every which way, but I also got my first good tangle in it too so, progress!
My recurrence cancerversary is coming up still. I see my gyno for my annual on Valentines Day (yeah, I know, how lucky am I? LOL) and she was the one who found my recurrence, during last year's exam. She saved my life. Methinks I should stop at the bakery and take the whole office a platter of fancypants brownies. That woman deserves some seriously decadent chocolate.
I hope you are all doing well and living your best life, every single day.
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My nail beds have started to turn grayish color. Is there something we are supposed to do for this new side effect? ;(
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hey all, it’s been so quiet here. Happy to hear everyone is getting back to their lives.
I had an inconclusive mammo in Feb. There is some suspicious activity at my scar site that created calcifications. They aren’t sure if it’s fat necrosis or something nefarious.
I saw my breast surgeon, and I am having an excisional biopsy next week. He’s going to take about an inch of tissue.
Of course my anxiety is high, and I’m not happy to be having surgery during this coronavirus mess.
Trying to put on a brave face. 😕
Stay healthy everyone!💕 MM
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Hi MsMarie,
Sorry to hear about the inconclusive mammo…. very stressful time. After radiation (which I had last February, before chemo), my breast has remained edematous, slightly sore and lumpy (with necrotic tissue). Perhaps your suspicious calcifications are radiation related necrosis. Guess you'll know soon. Although it's not soon enough...
The COVID 19 virus is indeed something to make me pause too. Particularly, with developing radiation related subpleural fibrosis. While we know the risks when making our treatment decisions, things like the coronavirus outbreak jerk us back a bit. As you stated earlier, 'part of the rest of our journey.' Guess the anxiety doesn't entirely leave us, but lessens with time.
You ARE brave. Hang in there and keep us posted.
Ro
May you have warm words on a cold evening, a full moon on a dark night, and the road downhill all the way to your door. ~Irish blessing
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Thanks RO! Yes since radiation I am having similar symptoms as you. My breast is firm and aches. The lymph area aches too. I can feel a soft lump where the scar is, it isn't as hard as what a tumor feels like. So I am praying it's benign. I had a hematoma after my lumpectomy last year and perhaps it's related. No way to know until we examine the tissue.
I am trying to stay positive. My son's school trip to NYC was cancelled by his district. He's a senior in HS and they are cancelling UIL competitions, extending spring break, and may be cancelling prom and even graduation! Nooooooo. Ugh I feel so badly for our 2020 seniors.
But I know we need to manage this spread so I'd rather events be cancelled than have the disease spreading.
Just praying life can get back to some sense of normal! MM
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Ms. Marie,
Please keep us posted on your biopsy. I am sorry you having that stress along with all the COVID 19 stress too.
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Hey Bam!
I had the excisional biopsy Tuesday. It was basically the same as my lumpectomy. They placed 3 guide wires and it took 2 hours in the mammo machine 😬 just for that part.
My surgeon called today and it’s B9! I had the luck of the Irish🍀. I’m so happy and I’m having that glass of wine tonight!
Thanks for the positive thoughts! Everyone stay healthy😷
💕 MM
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