Starting chemo February 2018
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Good morning ladies on this thread! I don't post much here but I do check on you guys as I did most if my weekly Taxol/Herceptin/Perjetta in February. I was initially on Taxotere/Carbo/H/P late Dec but my body could not handle it so late January we went with Taxol as the Taxane. Long story shorter, I went on to surgery with direct implant in late March and now have resumed H/P for the rest of the year. I'm glad to see you guys finishing up and cheering you on in the next portions of your journeys!!!
I wanted to mention another thread,
Topic: Changing Diet and lifestyle to prevent recurrence
It's very informative and I'm finding lots of encouragement there too. After chemo I think I was kind if going through PTSD. If any are interested it helps me to feel like I'm doing all I can to never go through anything like this again!Blessings to all of you, it's tough but our battle scars will soon be behind us!!! 💕🌷😊0 -
P.S. For all the +++ women (all though I've seen some who aren't triple positive post) thus thread is also very imformative. One woman, SpecialK, gives very detailed answers to clinical questions! Way over my head sometimes but she'll try to answer questions as doctors may not explain in such detail. If you want to check them out
Topic: TRIPLE POSITIVE GROUP
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Pbello congratulations on finishing the chemo part of your treatment! Wish you the best for the rest of your journey.
AnxietyGirl I understand your questioning of the future. I have the same apprehension. I still have to go to surgery and hesitate between lumpectomy and double mastectomy. I am afraid of recurrence.
I got dose 3 taxol today. So far so good. Last week was Ok with almost no SEs. I hope it stays like that for the future.
Have a good memorial day weekend!
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Lolotte - my surgeon said mastectomy doesn't remove prevent recurrence. Have you read the American Breast Surgeons consensus statement on contralateral prophylactic mastectomy https://www.ncbi.nlm.nih.gov/pmc/articles/PMC49994...
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Well, I'm all done. Had my last dose of Taxol this afternoon, and now I just have to hope and wish to never see the inside of the chemo unit ever again.
It all felt a little anticlimactic. Nobody acknowledged that it was my last treatment, the nurse was very distant and detached (as opposed to the other nurses who chatted more and let me know which drugs were running and when they were starting them and all that). I've been told about people "ringing the bell" after their last treatment to celebrate, but there was none of that for me. I walked out alone without so much as a wave from the nurse.
I called my mom afterwards, she was very excited. My best friend chatted with me online all day and she's very happy, too. Still, it would've been nice to have someone with me mark the occasion, I feel very unimportant right now. I'm glad it's done, and glad I haven't been I'll, but I feel gloomy tonight, it's very strange. I think I'll watch a fluffy movie to cheer myself up.
Walden1, thank you for telling me about the ladies in your life who had the same cancer as me and came out the other side just fine, I really needed to hear that.
I try not to Google too much, so many blogs out there are about recurrence and mets, I like to think that's because the majority of ladies get well again and move on with their lives instead of talking about it forever, so there's not a lot out there about them, it helps so much to hear positive stories and know that it's not all doom and gloom.Lolotte, my surgeon discussed lumpectomy vs mastectomy with me, and I was told that with radiation, the risk of recurrence is no different with lumpectomy than it would be with mastectomy. It's a very personal decision, do what you feel is best and what gives you peace of mind, and don't feel pressured into a decision that you're not comfortable with out of fear. It's your body and your life, don't forget that.
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lolotte- Mastectomy does not decrease your risk for reoccurrence. . My surgeon stated based on the size of my tumor he was recommending a lumpectomy. When I asked him if it would be better to have a mastectomy instead of a lumpectomy he was adamantly against it. He stated having a mastectomy when I did not need it would not affect my reoccurrence rate. Also, lumpectomies and mastectomy recommendations are based on size of tumors. location , genetic/family hx and other factors. . Fortunately they found a second tumor prior to my scheduled lumpectomy and it was switched to a bilateral mastectomy. If they hadn't discovered the second tumor I would have went with the recommended lumpectomy. You need to make the decision that you feel is best for you. And may you find peace in whichever decision you do make. They're always second opinions.
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lolotte-I researched this as much as possible because I desperately wanted a lumpectomy rather than the mastectomy my surgeon recommended. He also told me that lumpectomy with radiation and mastectomy have equal survival rates. However, I found the rates of local reoccurrence (in the breast) was harder to confirm. Double check all this yourself but I found the fine print on many of these studies is they are equal when the tumor is 3-4cm or less. My surgeon said mastectomy would reduce my risk of localrecurrence by 2-3 percent compared to lumpectomy.
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My final chemo was yesterday. I thought they'd do the whole congrats thing but nothing though I do go back every 3 weeks until next Jan for herceptin so maybe they don't celebrate till then. Anyway it wasn't a great day, they had no beds and they added 1 hour for magnesium so I was in a recliner for 5hrs, then my nurse had the worst cold /flu, she had a mask on but I could tell she was really sick, in my mind too sick to be working with chemo patients with no immune systems, hoping I don't catch whatever that was. Got my surgery date, July 3rd, then if I'm immediate to Implant and I need radiation I will do that next, if I get tissue expanders no radiation until implants go in. Went to a concert last night after a 7 hr dr visit but was riding high on the steroids so it was nice to get out. Anyway enough about me, hope you are all doing well, you girls are the biggest reason I got thru the chemo part and I sincerely want to thank you all
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walden- when I was speaking of. reoccurrence it was in reference to distal reoccurrence not local. My surgeon did not address local recurrence at all.
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Debmisto- congrats on being finished with chemo.
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Have not posted in a while I am doing well just tired and fighting anemia. My daughter who is 42 and pregnant has been ill so I her kiddos my 14 and 16 year old grand daughters have been staying with me as she is in the hospital and more than likely will be there until baby comes. They are wonderful help but I have been enjoying this extra time with them. I did want to post some important info about two new genes we need tested for if we have strong family history of BC and some other cancers especially if you have strong family history where tested for BRCA genes and came back negative you need tested for these two also. These where added at the first of the year and yes it is for lynch syndrome which is what I have.
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Deb and anxietygirl-congratulations on finishing that last chemo. What a relief to call that done
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ladies, thank you for the well wishes for finishing my chemo treatment!
pbello, rockcity, anxietygirl, debsmisto, momlovesherkitties - congrats on being done with chemo too! you are brave warriors! have an amazing post chemo life!
cupcake, to second what you're saying - what's most important post breast cancer treatment is maintaining a healthy lifestyle with exercise and good nutrution. In the next couple if days, i'll be looking for some good threads on this site for both of those topics and report back what i find. Yes, I have come across SpecialK posts, they are very informative.
Question, is anyone starting Tamoxifen next?
Hugs to all!
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Hello all, glad to hear congrats are in order for so many of you. Hope the ones who are still going strong are good too. I just wanted to check in and say, I'm all done, everything. Radiation was so easy, not sure why and I have not had any SE's with it. Also, my energy is back. I am so relieved. I was so worried that I'd never be the same again and live the rest of my life in pain or with no energy. There is life after chemo. Love to all of you who have shared this journey. I am wishing you all the same low to no SE's soon.
Laurie in da hood
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Finished 4 rounds of chemo in April for Invasive Ductal Carcinoma Stage 1, grade 3. Scheduled infusions on Mondays, so I could work 3 or 4 days (energized because of the steroids) then needed Friday-Sunday to recuperate. This 3 day rest window was longer with each infusion. By the 4th infusion, I needed a week to rest. Effects of chemo were cumulative for me.Hope that helps.
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indahood-great to hear you did so well through radiation. Do you know if your nodes under the arm and at the clavicle were included? I've was given the option of including those although my under arm nodes are clear. Had lots of second opinions from ROs but 50% do it and 50% said don't. Just curious what advice you received if any
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Hi Walden, I know that they were not included. But I was node negative and my tumour was in the lower portion of my breast, around 7 o'clock. I did partial breast irradiation while participating in a trial. It was awesome, only 5 treatments, strong, directed at the tumour site only, not whole breast which is the standard of treatment. They line the radiation beams up so they do not touch any lungs or liver. I think they even miss the ribs.
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How's the Feb girls doing over here? I'm day 5 out from my last chemo, I will say chemo is definitely cumulative these last 2 rounds really knocked me out, way more fatigue. Plus all these new decisions to make, ugh, not an easy road huh guys? Hope you are all doing OK
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Hi Debs - Are you going to be needing more treatment after the chemo? I hope you get your energy levels back soon!
I'm good! 1/3 of the way through the 12 taxols, bloodwork tomorrow & hopefully treatment #5 on Thurs.No signs of neuropathy, just a bit of bone/muscle pain on the weekend. Also I'm eating waaaaay too much. I think the steroids make me hungry and there's no nausea or sick feeling with taxol so I'm just eating, eating, eating!
I'll meet my RO this Friday. I'm curious to see what the recommendations will be.0 -
Yes Moth, possible radiation, surgery still scheduled for July 3rd double mast possible reconstruction, I knew what to expect from the chemo, this all sounds new and daunting.
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Hi everyone. Congrats to all of you who are done with this part of the bullshit!
I have not been a very good mood lately. I'm trying to stay positive but I'm mentally worn out.
Saw doc yesterday before tx. Looks like my blood counts are finally creeping back up. Still anemic and neutropenic but just barely now. I asked when I can get the damned port out and she said the next week after my last chemo if I wanted to. Whoo! Going to have to get another ultrasound on my ovary. Hopefully it's nothing, and if it is it's unrelated to bc. Kinda want them to take it out just so I don't have to worry about the dumb thing. Six of my nails have started to come up from the bed but I only think I'm going to lose two of them I hope.
Another weird side effect I've had from the taxol is that I've lost my knee reflex and my achilles reflex. I didn't know I had until I stumbled onto that as a possible side effect when I was researching something else. Out of curiosity I tested mine and sure enough I don't respond at all to them.
Three more taxol then three week rest then onto rads. Then tamoxifen. She told me she was going to wait a couple months to start the tamoxifen to let me heal up? Probably to see what SE were chemo vs. tamoxifen.
For those that haven't had surgery yet - I already had mine but when we were discussing options they gave me the options of lumpectomy or mastectomy. I opted for mastectomy because of node involvement and general panickyness. I was aware of stats of both but for me I just felt better even it was illogical at the time. If I had the lumpectomy mine would have been more like a half mastectomy anyway because they suspected nipple/skin involvement (correctly). After pathology came back she said I made the right decision because there was more going on in there than showed up on the mammogram. Besides the tumor we knew about I had other multifocal IDC and some DCIS that didn't even show up. And the blood vessels and lymph channels on their way to the node were involved too. So in my case if I had chosen lumpectomy I would have had to go back for more. BUT I did this before chemo so none of it had shrank/disappeared at all. Now when it comes to reconstruction later I have zero medical reason to get the second breast removed except for possible purposes of symmetry. Will discuss that with PS when the time comes. I have lost considerable feeling across my chest from the surgery but my major problem with the mastectomy was the removal of 7 nodes which they would have done either way. It's caused some lymphadema which I'm seeing a PT for on a weekly basis.
I'm opting for rads because of the involvement on the blood vessels and lymph channels. Otherwise I might not bother.
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CBOK- we all understand where you're coming from. It is a bunch of BS. Glad your counts are slowly coming back up. With your lymph node involvement I can understand why you chose radiation. I had one positive node so Rads for me, too. You've had a lot to deal with.
I had my annual physical yesterday. My PCP notified my MO this morning that my WBC count went from 3.8 to 1.3 in 10 days. He immediately placed me on antibiotics for the next 9 days. I am concerned because my final chemo is in 9 days. Any advice on how to avoid complications. I know you guys have been through so much with the neutropenia and infections. FYI: i feel great. No temp. No pain/swelling. I Continue to run daily. I work 6 days a week. This is frustrating because I am feeling good. Last week I skipped running 2 days because of foot cramping and fatigue. Advice is welcome.
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Fwiw, 1.3 in *MY* exp is not that bad. Nobody really blinks at that here. I had several rounds of Taxol (reduced dose) while at 1.0
Oh & they don't do prophylactic antibiotics here either - so it's interesting how different MOs are
If you're below 1.0 then I think it's more serious. But any time I'm under 2.0, I try to follow this list of precautions that I posted in another thread: https://community.breastcancer.org/forum/69/topics...We have a box of masks and if I absolutely must go somewhere where people are around, I wear one & I carry hand sanitizer and use it very frequently.
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moth-thanks. I knew you would have the answer because you went through all this mess. I didn't realize the significance of 1.3 but I was shocked when antibiotics were ordered immediately. I was scared. And I take my temperature every morning and every night. My chemo nurse had nade the recommendation because she said it was always good to know your temp. I've never had an elevated temperature with chemo. I have the occasional small abscess on my hand and it disappears within 1 to 2 days. Most importantly I feel great. Being a therapist I wash my hands about 30 times a day. I wear masks if any person in the room even has a sniffle. I don't want anything to interfere with my last round of chemo. I remember how frustrated you were with the postponements with yours.
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Taxol 5 went fine yesterday & today I had my physiotherapy appointment for lymphedema screening (all fine; one more checkup in 6 months and then I think they'll be done with me) & my consult with the radiation oncologist.
They're recommending 16 treatments & gave me the option of 4 boosts because I had a 1 mm margin on one side (the tumor was right up against the chest wall fascia). I said yes to the boosts since I'm essentially a triple neg & can't count on hormone therapy to keep things in check, so I want to treat aggressively. My center offers respiratory gating so I'll hopefully be doing that - they will confirm once they do the layout scans.
It seems like I'll have a bit of a wait though. They've got backups and delays in the radiation department right now so I might no be starting till Sep. If so, I'll get to enjoy a camping trip at the lake! On the minus side, it means I will have to work rads around school as I've pretty much decided to go in September & not defer admission to January. Oh well, it will all work out somehow.
Gotta say I was pretty excited to meet with the radiologist because it means the end is in sight as that's going to be the last phase of treatment for me.
And offering more gratitude to my GP & surgeon for working hard to have my surgery fast. That stupid tumor was fast growing & just mm from invading the muscle and that would have sucked. He excised it beautifully.
As far as current chemo complaints - having no eyebrows or eyelashes means my sunscreen & sweat really run into my eyes!!!! Even though it's mineral sunscreen it still stings! I'm going to have to resurrect the 80s and start wearing a headband LOL!0 -
moth- I had to laugh when I read your post about the eyebrows and eyelashes. I look like an old woman from the 1980s wearing a headband because when I run I have nothing to catch the perspiration plus I have no nose hair so my nose runs all the time. LOL
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Hello all, it’s been a while since I checked in. Congrats to all who have finished chemo. I am debating my options for radiation. Although I’m node negative, and had a mastectomy it’s still being recommended because I have other features that make me higher risk for reoccurrence: age, grade 3, multifocal, size of tumor. Still trying to decide if I will do chestwall only or chestwall with all nodes (breastbone, clavicle, armpit). It’s going to be hard because I want to do everything possible to kill the existing cancer, but don’t want to incur the sideffects unnecessarily. The reasearch that guides these radiation decisions is not as useful to me because of my age (44), doctors just don’t have the data to say what my risk is 30-40 years down the road.
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CBOK- just read your post concerning radiation and mastectomy. Sounds like we are on similar paths with treatment. I had a mastectomy without reconstruction and seven nodes removed about 1 month ago. I haven’t noticed lymphodema but do have strange numb feeling and tenderness. Exercises and massage to get full range of motion are working well. If you don’t already have a physio doing massage for the scar tissue I would highly recommend it
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NPR radio show is reviewing the new breast cancer study regarding chemotherapy. It's on NPR now. For those of you who might be interested.
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I finished chemo today. My chemo dosage was slightly decreased today because of my low WBC. My MO wanted to be extra cautious. He also gave me another prescription for antibiotics. He ordered a new prescription for antibiotics to use if I develop a fever. I've never had an elevated temperature from surgery or chemo. So I'll start radiation in approximately 8 weeks and I will continue with infusions every 3 weeks for a year. I thought I would be able to skip the HP during the next eight weeks. My doctor says the herceptin and perjeta will continue every 3 weeks without a break.
I loaded up on Bagels, pastelitos and fruits to take to my MOs office and the chemo lab. My oncology nurse was so funny. She told me if a patient is receiving chemo and infusions they have a little acknowledgement party ONLY when the infusions have been completed.. I told her this is my Milestone and I am celebrating the completion of my chemo. Just as I celebrated when I completely recuperated from my BMX. She started laughing and told me it would be great if I celebrated at the end of each month and continue to bring goodies for the staff LOL So I have two more to go Rads and infusions. Food continues to taste like crap, so, I won't be celebrating with a glass of wine but I will sip my Gatorade from a crystal wine glass. I had a 10K scheduled for tomorrow morning but I still have three blisters on the bottom of my toes. So there won't be any running or power walking tomorrow. Hopefully I'll be back in running form within in a week. Tomorrow evening I'm going to attend my nephew's graduation party. Hopefully the weather will improve here. We've had a lot of rain and thunderstorms this week. Have a wonderful weekend.
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