Starting Chemo April 2016
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The most difficult roads can sometimes lead to the most beautiful destinations
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So proud of you 7 of 9 , congratulations on your achievement - inspirational for the rest of us. Am just 11 days PFC and cant imagine what you have achieved. - well done.
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7of9 - thanks for the gorgeous pictures. Well done.
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7 of9-Looks like it was a beautiful trip! Congratulations.
Mizzoh- Congratulations on completing this part of your journey
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Hello all -
I've been slowly reading through this board, but while I'm doing that I wanted to post. I am looking for anyone diagnosed with chemo induced cardiomyopathy. I have now been diagnosed with this after completing 4 rounds of AC (which hospitalized me twice - neutropenia) and 7 rounds of Taxol. My MO has stopped my chemo and I've been referred to a cardiologist and they've started me on a Beta Blocker. I'm told that there's no evidence of muscle damage so recovery of heart muscle is possible. It's just all a bit overwhelming and scary to have this diagnosis. So, hoping to connect with someone that's had a positive experience getting through this situation (please no negative stories as I'm already scared enough).
Also, I was just wondering - I've been off chemo for 3 weeks now. My hair has started growing back, but what I'd really like to see grow are my eyebrows and eyelashes. Can you guys share how long it was before those started growing back?
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Pinkidc51 - sending positive thoughts to you for your cardiomyopathy. Hope that clears right up. I'm 5 weeks post Taxotere/Carboplatin and while my head hair is still just fuzzy, I am getting lots of new eyebrows. Cute little things. Only a couple of eyelashes, but at least they are now coming in as fast as they are falling out.
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bagger - Thanks for the well wishes and info. I'm glad to hear that your eyebrows and eyelashes are all growing at 5 weeks. I've heard of lots of permanent hair loss with Taxotere, so if that's what you're seeing with that drug - hopefully that means I'll be seeing some eyebrows soon. I most want those to come back so I don't have to draw them on anymore. I'm always very self-conscious about my drawn on eyebrows (mostly cause I'm always worried I will do something to wipe them off during the day).
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PinkiDC51: I assume you have tried to use the search feature on this site to look for cardiomyopathy? I have no experience with this , but best of luck going forward.
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Hello again, everyone!
I'm done with AC, 8/12 into Taxol (9th coming up this Thursday) and ready for a week off to go to MEXICO with my travel agent team. I'm due to finish chemo on October 13th. Then comes the decision about what kind of surgery. yikes.
The duck down on top of my head is now long enough to catch my glasses so they don't slide off, my eyebrows and eyelashes are making a comeback, and the 7/8th of a Brazilian remains in effect.
Back the gym yesterday to start reversal of the 30lbs I put on since diagnosis and it hurts so good.
I'm not super worried about privacy since most of my journey's on Facebook and Instagram anyway so I'll be hanging out here a bit more.
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This forum has gone rather quiet of late. I hope that this is because you girls are all doing well and moving on with your treatments. I think by now, all of us will be done with chemotherapy which for me anyway was the hardest/scariest hurdle to face. Surprisingly, taxol was alot tougher than I expected. After AC I felt that was ready for anything but in alot of ways, taxol was harder on me. The fatigue and achey limbs really kicked in around week 6 of 12 and from there on it got harder. Neuropathy in both hands and feet by week 7 and then came the swollen hands and feet around about week 11. Im on lyrica for the neuropathy and I hope it helps long term. To be honest, I felt I lost my mojo about halfway through taxol and hit a bit of a wall with my treatment. I lost my positivity and fighting spirit. I hated how I felt - my body felt alien to me. I felt so tired and worn out. I felt old.
But I got there in the end. The scary part is over, so on wards and upwards. We did it!
I start Radiotherapy in early October. I've seen my Oncologist for a follow up yesterday and he's very happy with my progress. My future is looking bright! I've been put on Tamoxifen now which I started today. I feel positive and proud of myself. Im looking forward to feeling like the old me again.
What a journey we've been on so far! Thank you Numb for setting up this forum and thanks to all of you who contributed to it with your stories and anecdotes. Having you all "with me" has helped a lot. Even though I have been quiet of late you are all in my thoughts. I hope these next stages will be easier on us and I am curious to know how you are all getting on now.
Best wishes to you all,
Gracie x
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Hi Gracie, good to hear your progress and that you are doing well now . Sorry that the taxol phase was so tough. I did AC and taxotere and the taxotere was easier. Glad Radiation is going well and I am now on Radiation as well nearly 2/3 over last 4 left, cant wait, hasn't been too bad.
You are right we did it, went through a really tough phase and have survived well we have reason to be proud. I also miss the activity and messages on the group. I think bagger wrote that it had mostly shifted to face book. The group and the support really helped through the difficult phase. Thanks to Numb and all of you who posted and shared their journey.
Hope everyone else is doing well and Good luck to all. Its interesting how perspective and focus has changed - Im now so focused on waiting for the hair growth.
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Hi there, long time no hear but as Gracie said that is probably good as nobody bothers to post when they are not looking for help. I had a hard time on the AC but flew through the Taxol. I now have 8 rads done out of 16 so I am half way there and so far so good. The tiring part of it is the traveling to and fro to get it done. I leave my house at 9.40 a.m. and don't get back until 4.30 p.m. The actual radiation only takes a 15 min visit but I have to get buses and trains as part of my journey so my whole day is gone with the radiation. However, it is all part of the treatment and it won't last forever, so can't complain.
My next mammogram will be end of January and that will be the next scary part of this journey. I am triple negative so none of the hormone treatments are any use to me so when I am finished the radiation that's it. I will be relying on prayer from there on.
Hair is still pretty scarce, about 1/8th of an inch on my head and no eyelashes. I would love if my eyelashes came back soon as my eyes look very baldy looking and the eye makeup seems to melt away after an hour.
Hope everyone else is doing well. Love to hear how you are all doing since we started this forum.
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Numb, Gracie, Positive, and others-I'm still here. i finished chemo in June. I did radiation (balloon catheter, so it was only a week) and surgery pre-chemo, so I've moved on to Femara. That is going ok so far.
I'm looking forward to having enough hair to go without a scarf. I have about 3/4" now-not enough to leave the house bare-headed comfortably yet. I did find out that I have a WICKED cowlick, which explains some hairstyling issues I had in the past.
Positive thoughts to everyone
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Numb I think its hard to figure out what can impact the cancer. I was both Er positive and Her2 pos , I had a mamo pre radiation and they found a congregation of cancer cells ( not tumor). I was quite devastated as my chemo AC +THP was post op and with clear margins. Any way I had a second surgery , had a flu but they got the cells put with clear margins.
The way I look at it is they caught the cancer cells early and the advantage of the follow up mamo's mri etc is that it will give an early warning if required. I am now quite confident the second surgery took out those horrid cancer cells which could have caused a recurrence later.
I think one just has to look at all things with a positive view.
Now focus on important things like hair :}
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Great to hear that you 3 ladies are doing well. I too am starting to obsess about the state of my hair. No eyebrows/ lashes as yet but Im starting to see some fluff appearing on my head. Woohoo!!!
It's the little things
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Gracie-getting hair back is NOT a little thing!
My eyebrows and lashes just sort of popped back pretty quickly. I had long hair before this. Now I guess I will have a chance to try out a whole bunch of new hair styles...
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Numb: Yes, thank you for starting this forum. I've been done with "regular" chemo since mid-July, and now have Herceptin until May 2017 and Femara for 5-10 years. They are going well so far. I hope the rest of you ladies do as well as you can and relish and seize post-chemo life! Best wishes to all going forward! Signing off!
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Good to hear everyone updating. I just finished 33 rounds of radiation this past Wednesday and I got my port removed yesterday. (I could have had it done any time once finishing chemo, but my doctor figured it would just be easier to wait - get through one thing at a time) I did well through radiation. I didn't get really red until the end of my whole breast set up. I had 23 whole breast and 10 boosts to the surgery site. Aquaphor and some cortisone were enough to deal with it. My armpit is all splotchy tan but that will fade. Now I don't have to go back until Halloween for my follow up with my radiologist. Longest time I've not had to go to the hospital since February!
I have maybe a little more than 1/4 inch hair. It's coming in darker than it was before which I thought was weird. I still wear a scarf when I go out but go without at home. Had to actually shave recently - that was a bummer! Just a couple patches of stubble on my legs. Lashes are back. It was weird with my eyebrows. They thinned really slowly - the right one especially got a little patchy. It wasn't super noticable if you just looked at me, but since I was looking for it, I noticed! Then overnight they disappeared! I had about 4-5 hairs on each brow. They filled back in pretty quickly though so I think that since they slowly thinned, that there were new brows ready to grow back in. So they look pretty normal now.
I started Tamoxifen about a month ago. I'll probably be on that 2-3 years and then switch to something else for a total of 10 years.
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I still have 2 Taxol treatments to go (y'all let me in even though I was an early May start) and then BMX w/o reconstruction, which is my choice, not my surgeon's. We'll see about rads after that.
Eyelashes have mostly grown in blond, and there are dark spots at the root of some of the lashes which leads me to believe the newest growth will be my natural color. Eyebrows are the same as before, just really light-colored, and I finally trimmed them because they were getting so long! Underarm hair is back in full force, leg hair is still slow, and the 7/8 Brazilian is duck down all over now. The hair on my head is a reverse skunk of dark center and white around the sides and backs.
You can see my wild eyebrows in this pic with my daughter... they look like I'm stabbing her over her lip, LOL!!! The pic is a couple of weeks old now.
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KQ-what s sweet picture. And your hair looks good, too
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Thanks, LimnoGal! It's growing really fast. I found this pic of me in the Cancun airport on Wednesday last week. The pic above is about a week before that. I need to start "styling" it again because you can see over my left ear it goes a little whacked out without some guidance. And I need to stop running my hands through/over it all the time when I'm tired or frustrated. It actually shows when I do that now, LOL!!!
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njnancy I'm just starting post-surgery treatment this winter, but saw your post and wondered if your oncologist is at Sloan, who it is, and if you're happy with them. My Sloan surgeon referred me to an oncologist there, but I can't find many online comments from her patients.
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Wishing all the April 2016 women a very Happy Christmas and hopefully 2017 will be a far better year for all of us.
Thank you so much for all your support this year, you all got me through the worst year of my life.
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Dear Numb,
Thank you for the festive greetings and for setting this group up. It really did help me as well get through this very tough year. I wish everyone a very happy healthy and prosperous 2017. I often wonder how everyone is doing, it would be good to hear on this board as well ( I know many of you are on Facebook ).
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Numb, Positivepower11, and any other April chemo ladies - here's hoping for a better year for all of us! I really appreciated all of the participation on this board. It was very helpful to me throughout this long, strange trip we've been on
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Just wondering if anyone of us April Chemo women had their first mammogram a year later yet. Mine is due next Tuesday and I can tell you I am very fearful. I won't know the result though for a week to ten days after that. Love to hear how the rest of us are doing regarding that score. It would be great to hear if any of you had this mammogram and got the all clear, as it would give me some confidence.
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Numb - I'm scheduled for my mammogram Feb. 22nd and yes, there is anxiety! I did have a CT scan done at the beginning of Jan. that came back all clear, so that should help me dread it less, but there is still fear. (My onco sent me for the scan just for a post treatment baseline - wanted to do a PET scan but correctly predicted that insurance would deny it and settled for the CT). A few of us have commented on the FB site about having mammograms coming up and being anxious about it. I believe Annie has already had hers done and got the all clear.
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Hi Numb - I had a full mastectomy (and have had my final surgery just last week!) so mammograms are not in my future. But I get nervous over any test.
But yes, NJR is right - Annie had hers and got the all clear. I think several others are coming up, and there are a lot of nerves. It's a scary thing.
I'd love to know how everyone is feeling! I think I've finally gotten over most of the chemo side effects. I'm feeling much better now. Tamoxifen doesn't have too many side effects for me except the bloody hot flashes. I need to drop weight, but I can't blame that on Tamoxifen. I haven't been very good at diet, but that is changing now. I'm down 4 pounds and I'm determined to keep this up.
Anyone doing something to mark your cancerversery? I signed up to walk the 21 miler at Big Sur. I have a 10 mile walk tomorrow and I think I'll be fine.
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I had a mammogram at 6 mos. which was all clear. My next one isn't scheduled until March.
My husband and I took a long weekend trip to Kentucky to celebrate my birthday/cancerversary. It was a nice, low key weekend. But I have learned NOT to schedule doc appointments of any kind near my birthday
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NJR426 - that's great that you got the all clear at 6 months. What's the difference between a CT scan and PET scan?
I am feeling good, but my areola is white around my nipple on that breast and I mean bleached white, but if I rub it it goes. back pink again, I was wondering if the radiation affects the circulation. My check up is not until 21st March and I will ask about that then. I did ask a Dr. in the radiology dept at the hospital but she sounded to me like she is baffled and doesn't know the cause.
I got my mammogram on Tuesday last but was told that the results won't be discussed until my check up but that if anything shows up I will hear within 10 days. I was annoyed at first when I heard I had to wait that long but then I just thought it will be 10 more days where I can pretend I am clear, and then I can start worrying if anything does show up. That's all I can do.
I also have a soft swelling on my clavicle at the lower end of my neck to the front, just at the top of the sternum and my Oncologist was sort of blaming that on my port but it is still there and has not gone down and my port is out 5 months now I had an ultrasound on it and a CT scan and they showed nothing, but I am still wondering what it is.
I would love to have this year free of treatment.
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