Starting chemo January 2018
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How are you WorriedMe???
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Amelia - fyi, WorriedMe posted on the Feb thread. She's had a couple hospitalizations but is home now.
Patartist - I had the same heart symptoms and was told it's the adriamycin which is cardiotoxic. Resting HR (I wear a fitbit so I know) went up after the first infusion & has not yet returned to where it used to be; lots of sucking air when doing even minor exertion. The first week the resting HR is very high. The second week things calm down a bit but the resting HR stays elevated. In my case it got worse with each infusion so by the time I finished AC #4 it constantly felt like I was sprinting, even when I was shuffling to the bathroom. Things do get better eventually - around day 9 or 10 I see definite improvement (though when I was hospitalized for febrile neutropenia after round 4 my resident was freaked out enough about it to order a 12 lead ECG; they thought I was at risk of heart attack but at the end they concluded again this was just adriamycin induced heart stress + fever causing a crazy high heart rate + low BP)
Because I had numerous delays in my chemo because of fevers & low counts I'm almost 3 weeks out from last infusion and was able to go for about a 4 km walk yesterday with lots of elevation changes etc so in my case, things do get better.
I start weekly taxol tomorrow.0 -
Hi ladies! I went for my radiation oncology consult today. Much to my surprise the rad onc didn't advise radiation in my case. The reason he gave was I had really good margins (4cm), the positive node was not extracapular, and I will be receiving a year of herceptin.
This was all very surprising. I was resigned to receiving radiation and apprehensive about the potential cardiac effect (I already have a lot going on). I'm thinking on it but leaning toward skipping this treatment.
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Gigicommon, it's great news!
I myself finished my last chemo yesterday! It felt sooo great.
But even though my excellent oncologist thinks I am cured, that no single cancer cell would survive this chemo bs (8 DD ACT), I still asked to have an MRI - just to make sure nothing new is growing.Maybe I am overreacting but the fear of recurrence (or misdiagnosis in the first place) is oh so real.
And how are you ladies holding up? Are most of you starting radiation already? My first appt is not until May 30th - but they said they would start rads within a week
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Congratulations DxAt37! I went through the same chemo regiment as you. Finishing DD AC-T is no small feat!
It appears most of the women who have been on this chemo journey with us are finishing up this leg of the race. I'm so proud of all of you!
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Wow, AC and T all together. Ugh. Double congrats.
I had 4 DD AC, now am 2 of 4 into DD TPH, but every 3 weeks. Done the end of May as I didn't start til the end of Jan. Feeling pretty good but I am ready for it to be over, and for my hair to start growing back. During AC my resting heart rate was up to 77, which is high for me- it's usually 58 or so. Now back down to 66 resting, and I don't have to stop while biking to bring it down to tolerable/ below 140. Exercise has been my salvage through this.mess, for physical, mental, and emotional health.
Bad belly from first Taxol is mostly resolved, but now I know not to eat much dairy or beets. Imodium sure works well though. Ha!
I still have a full set of 25 rads to go, starting end of June/ beginning of July, but it feels like we are all through the crux of this. Regardless of recurrence chances, we have survived so far. Proud of myself and all of you.
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Hi all,
I just thought I would update in case this is useful for anyone else. After I kept having shortness of breath, dry cough, dizziness, increased pulse, plus UNBELIEVABLE FATIGUE this past weekly round of taxol, my hemoglobin came back at 8.1, and that was after my counts were rebounding. This means I was severely anemic. I had thought the symptoms were from a cold, but I was wrong. So, I had a blood transfusion today, and now I feel A WHOLE LOT BETTER. All of my symptoms are gone. I hope I feel even half this good throughout the weekend. I had a CT scan yesterday to rule out taxol-induced pneumonitis or a pulmonary embolism (I don't have them). I'm six treatments into Taxol, and two into carboplatin, after 4 dose dense AC. My docs said they were surprised I held out this long without my counts dipping like this, and that I shouldn't be surprised if I have to do a platelet transfusion in the coming weeks. I honestly don't mind because I feel so much better.
I hope this info is useful for you ladies who are on the Taxol or far into chemo. Also, I'm thinking about those of you with the annoying SE. I haven't had the itchy hands and feet, but I have had neuropathy, which affects the same areas, and I have found CBD oil to be helpful there.
I've gained a lot of weight, not all due to cancer treatment, but the steroids (I have to take 40 mg before each weekly Taxol, plus another 4mg per day on the weeks I get carboplatin, and I was on 8mg prior to each AC) really pack the weight on. I know Weight Watchers is in my future this summer.
Amelia01- Are you on neulasta or granix? It helps with the neutropenia, which I ended up having during my first bout.
Stay hopeful, folks! We are going to make it through.
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I was the first to start (Jan 2nd) and will be last to finish (June 11) - I’m just going to have a big pity party for myself.
I have been prescribed DD rads - has anyone else? 15 i/o 33.
eschindler- Taxol induced pneumonitis? Is is a real thing? Or just what they say when there is coughing involved? How much cbd or with what frequency?
I’ve been begging my MO to just DD me and get the show on the road but she has flatly told me she refuses to kill me. I’ve even proposed rads during Taxol and they won’t let me do that either.
I feel great! I am energetic and I exercise (some bouts of fatigue here and there but nothing that concerns me). I just wish the rest of my body was on the same page.
No filgrastim on Taxol, says MO.
So I went to the grocery store today and held my breath. I can’t be indoors for a week. I’m climbing the walls!
All of you with DD ACT are amazing!!!!
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Amelia01-
Yeah, apparently the taxol-induced pneumonitis is rare, but real, and kind of dangerous. It's just inflammation in the lining of your lungs, but it can be fatal if it goes undiagnosed and it can also be permanent. Such a delight, eh? But again, it's really rare!
As far as CBD, for neuropathy, I find the kind that has a little bit of THC in it most helpful, and it's just one dropper full with symptoms. If you go to a pharmacy that sells these things, you can usually get advice from the pharmacist there as well. Also, there's a website called leafly.com that has a lot of information about use.
Re: the neutropenia, wear a mask in public, and gel in and out of everywhere, including places in your house. Also, there are special soaps (like hibiclens or others you buy at the hospital pharmacy) that really kill a lot of germs on your body. It's no fun to end up in the hospital being neutropenic, because the hospital is a germ factory, too!
I start Rads in July. Not looking forward to that, but I am looking forward to the month off between chemo and rads so I can recover a bit.
Wishing you best of luck, care, rest, and exercise!
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Ladies,
a question (or a few)- Once you're done with chemo - are you using biotene- capsuls? If so, what dose?
What about Rogaine treatment (or other brand) for the scalp?
any serums - for lashes or eyebrows?
Are you going crazy with supplements? vitamins etc, or you're just sticking to multivit once a day?
and what about mani pedi? Did you polish your nails during or right after?
I was told not to for a month - to let my nails breath so less chance for them to lift (on taxol). But I am sooo tired of no color of my nails!
Please do share how you are getting back to normal - or "new normal"
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Hello ladies. Hope everyone is well. Congrats to those that ended chemo, are gettimg closer to ending chemo, or starting rads:)
DxAt37 - I'm taking Biotin when I remember. I don't have it in front of me, but I know I bought the highest dose. My hair is coming in, but is very short. About half an inch (or less). The dark hairs are darker than I remember them (but I've been colouring my hair for so long, I might have forgotten what my real colour was). The white hairs are longer than the dark hair. I don't know what's up witj that. A couple of days ago I shaved my legs. Yay. It felt so good. The eyebrows keep disappearing:( but I still have eyelashes.
Otherwise, I'm not taking any vitamins or supplements. I don't avoid them, I just didn't feel the need. Interestingly, at my 6 week post chemo check-up, my WBC count was below normal. I guess now that I don't have the steroids to keep that up, things slipped. The MO didn"t seem concerned.
The new normal - I don't know if it's what I expected. I started the Tamoxifen. No SE yet. And I've been having this dull pain in my rib (or breast?) on the right side (the cancer site). I'm going to meet my BS on Monday. Hopefully it's nothing, but the google search led me to some Stage IV forums
I guess this is the "monkey on the shoulder" we have to carry from now on. Every ache and pain could be nothing or ...Love to all. Have a great weekend, ladies!
XO
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I’m doing better now... Chemo has been really kicking my ass tho!!! Been In the hosp a couple times for c diff infections nasty 🤢 stuff I tell ya.. Then I developed a horrible bladder infection one thing after another... had round 5 yesterday and so far the steroids have me feeling ok... How are you my pink sister?? I have not posted much because I did not want to Be a negative Nancy and complain
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I'm doing better now... Chemo has been really kicking my ass tho!!! Been In the hosp a couple times for c diff infections nasty 🤢 stuff I tell ya.. Then I developed a horrible bladder infection one thing after another... had round 5 yesterday and so far the steroids have me feeling ok... How are you my pink sister?? I have not posted much because I did not want to Be a negative Nancy and complain
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Hi, Roxy13! I've been wondering how you've been doing. I'm finishing up radiation next week and then on to tamoxifen. I'm glad to hear you've got no side effects yet, and obviously I'll hope for the same for myself. I hope your rib pain turns out just to be some rib pain. Sending good vibes.
Radiation has been less difficult than I expected it to be, though I am getting fatigued. Unfortunately my twin sister was diagnosed with breast cancer this Friday. Ugh. Cancer is the worst.
I'm so sorry to hear about all the side effects, WorriedMe! I hope these last rounds treat you better. Sending good thoughts your way!
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Okkate! I'm so sorry to hear about your sister. The positive in this is you know the route and can really be a great support and resource for her.
I'm glad to hear radiation was doable for you. Remain strong. Your sister will need you.
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Oh, Kate, I’m so sorry about your sister... I’m sending good vibes to you and her, and I know all the other ladies are too. We are here for you.
X
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So sorry to read about your sister, Kate. Are the doctors thinking it is a genetic issue?
My Dad was just diagnosed with very early stage prostate cancer. When I was diagnosed I was asked about cancer in the family -- nope, no one, never... well, guess I was just diagnosed first. There is a correlation between ILC and father's side (later discovered that all his bothers and sister had a cancer of some sort) and prostate cancer. His is very "curable". I did genetic testing and am still waiting for the results. I was told it would take months.
WorriedMe - sending you huge huge hugs! I can't believe on top of everything you are battling with C Diff. Can you handle eating a tbl of coconut oil every day? If you are a coffee drinker you could stir it in (needs to be warm to melt). That might give you some relief from symptoms and keep the nasty bacteria at bay. It is a natural antibiotic.
Roxy - glad to hear you are doing well! Brown hair growing in, how lucky of you! Most people get grey
In addition to Biotin, my MO suggested L cysteine 500mg 2x a day. DXat37 - I polished my nails during tx and even had a pedi at the clinic where I go they have a day spa! -- up tomorrow during chemo is a leg wax- why not, right? There are a few companies on the market that make lesser chemical-laded polishes- Butter of London and even Chanel come to mind. A google search will probably turn up more. I'm using OPI nail envy during tx as I read it helps with nasty Taxol effects. May I ask where you doing rads? I'm looking for a place (In chicago) that will recognized my dose dense tomotherpay prescription.
Has everyone kept her finger and toenails? I was told to use a 5% urea cream and slather on nails and put soft socks on so it penetrates under the nail bed. The urea is supposed to help slough off the build up of keratin which is what causes them to lift off during Taxol.
Tomorrow is Taxol no. 7 - I AM FINALLY ON THE LAST STRETCH!!!!! Even though I skipped 6 -- I literally count the weeks until the end. During this week off I have been feeling fine, I even look ok enough (with makeup and wig, that is). I can't tell if my hair is coming or going - and I look like scary clown without the wig.
The weather has been beautiful here and that really helps with mood.
And then I did the unthinkable ..... I bought a bathing suit. In a moment of complete delirium I saw that suits were in the stores already so I tried some on. I have to cover my port (nice .. right in the visible neckline) and I need to somehow compensate for the enormous TE and my itty bitty titty on the normal side (btw, having that cut off in the fall because I think it is a good idea). So, looking for a suit that satisfies my many requests I came across a halter top that if worn by the right body, looks right, on me --- looks like I'm trying too hard. Now I need to find a prothesis to stuff on the other side to balance them out. I can't believe my PS is really going for a full C cup (or so it seems). I'm ok with it -- I've always had small breasts unless I was breast feeding. Might as well go with some cleavage, it will always make my usually fat gut look smaller.
So much of this horrid journey has a daily reminder of the toll it has taken on our bodies --- always adding insult to injury.
Love to all xx
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Roxy- thank you very much for info on biotin.
Okkate- sorry to hear abt your sister but I am sure she’s a fighter, just like you are! Stay strong.
Amelia- i am glad you’re in Chicago- I believe you were overseas at the beginning of the treatment? I will be doing rads at Advocate Lutheran in Park Ridge- at the Breast Center. They have pretty advanced technology with 12 types of rads (some places still have 3-more of one size fits all aproach). If you would like to get the info on a dr that will handle my rads (she comes highly recommended), please PM me- I am not sure if I can post last names and phone #
I have two boob sizes a B and C after lumpectomy and I am not sure how to wear a swimsuit....it just doesnt look right.
But my lack of real hair- just peach fuzz thats getting longer is bothering me. We are going to Myrtle Beach on the 23rd and I am afraid there will stIll not be enough hair to skip the scarf....
Have a great Sunday
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I don’t know about the genetic test results... I tested negative for the BRCA 1 and 2, and a bunch of other genes, yet my mother and her sister both had breast cancer. That’s a pretty big coincidence....
On a happier note, I also moved from an A cup before the mx to a C after reconstruction. My PS said he would give me a B, but when I went br shopping and they measured me I was 34C. I have to say I’m quite pleased with the results. If only they didn’t look so fake
))Have a great Sunday, everyone!
Big hugs
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Hi Ladies-
I hope I don't offend anyone with this suggestion, but when I was going through reconstruction I found a suit at Land's End that was cinched at the top and at the waist, and baggy in the middle, and so you couldn't immediately tell I was lopsided. You can bet it was one of the first things I stopped wearing when I was reconstructed, but it got me through.
Good luck swim suit shopping. I have to figure out how to be outside this summer during radiation.
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I think all suggestions are welcome, @eschindler
I went to see my BS on Monday for some pain I had on the cancer site. She was positive it was a pulled muscle, which made sense. The pain has subsided. She said she could order an ultrasound, and I deferred until June, when I have my 6 month checkup (post mx). Maybe I should have gone for it anyway, but to be honest, I just wanted a break from poking and prodding and waiting for test results and the works. She did say one thing I wanted to share here - that it’s not the aches and pains we should worry about, it’s the new lumps.
Hope everyone is doing well is doing well and enjoying the weather, wherever you are.
X
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Hi everbody, I don't post much but I do keep up to date on everybody in this group of cancer fighters. I just had my last Chemo 6/6 today TCHP I was so glad to ring that bell. my next challenge is BMS to be done in June some time have a Breast MRI next week and an appointment BS the following week. Good luck to everybody and will keep you in my prayers.0
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Next-to-last TPH tomorrow. Getting there... Feeling pretty strong but ready to have this phase over and done with. Spring helps.
Okkate I am so sorry about your sister's diagnosis. But you will be there with her and for her, as will the rest of this community.
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going for my third radiation treatment today. the good part - it's quick: within 15 min im in and out with changing! the bad part: i have to be in the car for 3 hours- 1,5 hour one way....
had my Herceptin yesterday in addition to radiation. was expecting to be tired. did not....
thinking of you ladies.
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Hello Ladies!
It's been a really long time since I posted anything here. I just had my 8th taxol on Wednesday. The last two weeks have been pretty rough. I ended up with severe back pain that wrapped around the front of my chest under my ribs on the right side. It was equivalent to kidney stone pain or labor pains. I saw my doctor and they sent me to the ER to get checked for a blood clot in my lung. Those tests came back clear and they ended up giving me percocet and ibuprofen. Only 14 pills though! I got a refill from my MO who gave me 30. I had to take one every 4-5 hours just to function and could still feel pain, but tolerable on the pain meds. This went on for an entire week. My MO sent me for a whole body bone scan just to be safe. I had that done this morning and will hopefully get the results tomorrow or Monday. My pain has gone away since Monday, thank goodness, but then I ended up with what felt like a pulled muscle in the back of my arm. Then this morning, I woke up and stretched and both calves instantly cramped up. My left leg cramped up so bad that I literally could not straighten my leg and the pain was awful. I think Taxol is doing a number on my muscles. My MO said that we can decrease my does by 25%. I told him that I wanted the full dose this week (which was yesterday) and then the last 4 treatments can be decreased. Now, after this morning, I may be regretting my decision to not decrease now! I'm a little worried about what this week will bring! I've been exhausted. Everything is such an effort physically. Just walking around my house sometimes, my legs feel weak, exhausted, and sometimes my muscles will hurt. I really can't wait to be done with all of this. I hope the decrease next week helps with these side effects. I've run a slight fever twice in the last week as well which brought chills and just feeling lousy. My bloodwork is still holding steady though, so that's a good thing. My MO said he would rather decrease my dose and have me finish all 12 treatments than stop early. So, that is the plan and I'm determined to finish. I hope everyone is having a better week than me!
OkKate - I am SO sorry to hear about your sister. She'll definitely have a great support system in you.
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Paisley - I just wanted to touch base because I had the same pain issues on taxol and thought I was going crazy. Not to be doom and gloom, but I just wanted you to know that after my last taxol it was really bad and I had various bone and muscle pains, cramps etc for weeks. I was terrified because I couldn’t really find anyone else with such a reaction and my MO nurse said it was “unusual “. I got through it with a lot of pain meds and Ativan. I just thought this might put your mind at ease that some other poor soul out there knows your pain!
Good luck.
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VL22, thank you for telling me that. I was also told that it's uncommon and that I'm very "sensitive to all the drugs". Are you still on taxol? Are you still having pain? I just hate never knowing when it's going to hit me - it's so sudden and severe when it does. I still have some Percocet left, so if something bad does happen I have that on hand, but if it continues I may ask them if I should have a muscle relaxer or something to help better. Now I'm dealing with diarrhea and acid reflux this week too. Definitely getting harder as I go. I really hope next week is easier when he decreases my dose. Did they decrease yours? Hang in there. This has been a bit harder than I thought it would be - but I'll still take it over that dreaded AC!
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Paisley - I finished 12/21/17. I’m not gonna lie - I had issues until the beginning of April. I had 6 weeks of radiation, which I don’t think helped matters.
My dose was never lowered. During the actual taxol, infusion day and like 2 days later I’d be ok, but then the premeds would wear off and I’d be hurting. But then I’d get another infusion and more premeds and feel ok again. After the last taxol no more premeds and my body just revolted! I also suffered from acid reflux. I guess some people just react differently.
AC was terrible for me because I had severe nausea. Taxol was just so frustrating because so many women finish chemo and then are going back to normal activities - I was in daily pain and fearing something was seriously wrong.
But now I am 100% back to my normal activities!
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Hi fellow BC fighters, I had my last TCHP #6 of 6 chemo on 5/8/18. So glad to have it behind me. My next step is Surgery some time in June (BMX). I don't post very often but I do read your post's and pray for all of you. Good luck ladies on this difficult path. Thanks for sharing your struggles and positive times.
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Kate, sorry to hear about your sister. I also have a twin and it worries me she will also be diagnosed.
Next week is my last chemo. I am counting the days as I can’t wait to get thru this. I will then have surgery and most likely radiation but just to put one step behind me is liberating.
Thinking of each of you
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