Starting Chemo in November 2017
Comments
-
Blair...I am finished with Taxol. I finished a couple months ago. Neuropathy is a major side effect of Taxol. I am now on an oral chemo combination of Ibrance and Letrozole.
I sure hope you don't have chronic pain with your back. I know what you mean about adding more drugs to your stash. I feel like that's all I do is swallow pills.Iris...I have an ugly big toe from the Taxol. The nail is very loose, but I'm not about to pull it off.
Kivan...Thanks for your thoughts and prayers.
Hope
0 -
Hope, ooh, sounds like we have matching ugly big toes, not gonna mess with my toe although may visit the foot doctor if nails get longer, so far i have trimmed them myself
Currently debating if i want to color my hair, maybe a funky color? Think I may give a call to my hairdresser for an opinion. Though the valet guy at the hospital this morning said i should keep it the way it is
0 -
I think my hair will get thinner when I start the tamoxifen. It’s beginning to grow faster I think. It’s going to look like a chia pet - oh my. I never had such tight curls!
Kivans - I hope you are right about the back pain. It hurts when I put make up on. When I sit back a few minutes, then the pain goes away. I guess my being slightly slumped irritates it. I can stand longer without it hurting, but if I bend over too many times, it bugs me again. It feels like the same pain I’ve had forever - that’s what concerns me. Maybe it will take a long time, but articles on kyphoplasty usually say there’s an immediate relief of pain right after. The surgery is not very invasive. I had no stitching on my back. I had bandaids that I finally removed. However, that procedure was more painful than I thought it would be.
Oh - after they told me last week that my mammo was ok, I get this follow up letter today telling me that they saw what they believe is a benign mass on my right breast, but they will follow up in 6 months on it. Really? (In other words, they don’t know what they see). I was told I was clean after my surgery - how could anything new grow that quick going through chemo? Did the breast surgeon miss something? I thought the new3-D technology on mammograms made detection more accurate and easy to detect. They should have just cut everything off so I wouldn’t have to be humiliated with questionable mammos the rest of my life! So sick of this!
Sorry, in a bad mood realizing how much science lacks.
0 -
Hi ladies, I have been catching up reading all the previous posts, as per usual warm hugs from the Caribbean. I hope that warm weather is finally coming in wherever you are. It seems like everyone is coping inspite of what the treatments throw at us. It has been a while, I missed you gals but you all have been in my prayers. I have finally finished chemo and is now on a 3 week break before starting rads but the cumulative effect of the 12wks of Taxol has been a bitch. I have been plagued with dizziness, extreme fatigue, headaches, a persistent dry cough that is just not going away and of course neuropathy of the feet. I collapased twice once in public and once at home thank God both times I didn't hit my head or had any major cuts or bruises. I have since had an MRI to see if anything went up to the brain (because of the migrane type headaches) the results came back negative, they also checked my heart can't remember what that was for but the reesults came back negative so that was good and today I am going to xray my chest (because of the cough). Just like that my skin started itching too, its so annoying. I have been sapping it with rubbing alcohol and that helps for a while.
Other than the tiredness I am feeling Ok not 100% but good enough to get thru daily life. My hair is growing back out the texture has changed and some parts look pretty sparse but hey there is gel. 😀😀😀😀 I just either gel it in place or wear a wig and keep it moving. My husband says I look like Smeegel from Lord of the Rings and we both crack up, gals I wish I had a pic so I can get a chuckle out of you too.
I am in pre-prep mode for radiation. The good news is i'm getting 3wks instead of 5wks. Seems like Aquaphor is the cream to get the nurses here are recommending Cetaphil had anybody used the two creams and can say which one they found to be better.
I have also gained some weight 10lbs total and a lot of my clothes are tight as hell especially in the arm area seems the weight went straight to my shoulders/arms and waistline...My nurse told me that it's the steroids and now that chemo is finished and i'm not using the steriod I should get back to my normal size...seems like a pipe dream to me....weight loss aint ever been that easy 😂😂😂😂
So as per usual my lovelies keep those chins up. We've come a long way we've been thru chemo and we are still here,some have been thru or going thru rads and still here...yes we have aches and pains but by God's grace and mercy we are still here. We are not giving up this fight. The battle isn't over but we are closer to the light at the end if the tunnel. One day at at time. We are kicking this to this curb.
Have a great week. I rebuke all side effects in the name of Jesus.
Dark13
0 -
well still dealing with my dumb toe but finally got a bandage on it that did not fall off in bed, mo told me to watch for infection so i am being sure to use lots of antibiotic cream
Watched the wedding, ok so i cried in parts! Loved the gospel choir
0 -
Look at what my daughter did to me today! Henna crown!
Hope - hang in there. Sending good energy. Here's hoping you are in the 59%!
0 -
wow your daughter is talented, it looks grest
0 -
Meow - Your henna crown is truly fabulous! Agree that your daughter is quite talented. How long did all that detail take?
I had surgery yesterday to remove my port, which was no longer functioning and had been causing me pain over the last few months. The primary discomfort I had as a result of the surgery was at the IV site in my hand (which is also where I've had to receive my last 2 Herceptin/Perjeta infusions, so the nurse said the veins were probably a bit more sensitive as a result.) The bulging vein in my neck, which has been present on and off (but mostly on) since January is pretty much gone as of this morning. I am hoping that some of the swelling and sensitivity I've had in my breasts will also be reduced now that there is less inflammation in that area. Since I have 7 more months of infusions and lousy veins, I will have another surgery to have a new port placed on the other side in a couple of weeks.
0 -
Meow - what an ingenious idea you and your daughter came up with! It looks like a lace vail or cap over your head. That had to take time to do. How long will it stay on your skin?
Dark13 - good luck on radiation. It isn’t bad at all - some irritation, but doable.
Magari - having a new port has to be a pain, but necessary if your other one was acting up. Glad to hear the bulging vein in your neck is gone. I don’t know how all of you on these longer infusions have tolerated it so well. Not easily I know, but I’m amazed that you could function so well.
It has rained forever here in FL and I’m tired of it. It’s unusual this time of year because it’s usually our drought period. My chimney has a leak apparently that will be a new headache to address. It’s leaked a few years before and now again. I’m about ready to have it rebuilt from ground up since it’s on the outside end of house. Always sonething
0 -
Nonahope Yes, may you be in that 59%. We are rooting for you.
Meow, agree with the others. A wonderfully creative idea, executed by your talented daughter. It looks spectacular!
Magari So glad to hear your port removal went well. It must be a relief to have it out and the bulging vein diminished. I know you probably aren't looking forward to another surgery to get a new port but like everyone has said its necessary. I too admire how those with longer treatment plans handle it so well.
Blair, I understand the rain getting you down. I need sunshine! I hope you have a change in weather soon. Despite the odds I hope your back improves. I guess the hormone therapy is the next step for many on our thread. I wish research was to the point where there was something other than a standard dose. It just isn't there yet.
0 -
Hello everyone,
I hope your weekend has gone well.
I'm about 8.5 weeks PFC. My hair is beginning to grow darker and thicker, but my scalp still shows, so I'm no ready to go capless yet. Pleasantly surprised the eyebrows have returned to normal (now I have to remember to keep them neat! I think the eyelashes are coming in too, but they're still pretty short.
I started tamoxifen today. Not sure I have experienced any side effects yet. I was very sleepy in the afternoon and fell into a very deep sleep this afternoon. Not sure if that has to do with the tamoxifen or just busy life in general.
I start radiation tomorrow, for six weeks. I'm a bit scared about it, but I know I just need to take things one day at a time, as with all the other steps of this overwhelming process.
Blair, we're so tired of rain too! We finally got some sunshine today, and it was great. Hope the leak is not too bad.
Meow, you look so fabulous! I regret not thinking of this back when my hair hadn't grown in!
Magari, sorry you need a new port, but I'm glad you're getting some relief.
Iris, I'm so sorry your toe is still giving you trouble! How's it feeling now? I got teary watching the royal wedding too.
Dark, I'm glad you have good warm healing weather to keep you smiling. We finally had sunshine today, and it was wonderful. I'm so glad to hear radiation will only be 3 weeks! I'm prepping with lots of aquaphor too!
Hope, I'm so sorry to hear that the Taxol side effects have lingered. I hope they begin to ease up soon.
0 -
morning all, promising myself to hit the gym this morning. Yeap is doing better, wrapped it for bedtime but letter it air out doing the day. Not a good night for sleep but i am up now and dressed
Watched the wedding yesterday, the gospel choir was wonderfully good and yeap, cried
0 -
it is a long time to be here. really I missed you sisters. hope all of you are ok and feel great. I will summrize my status that I don't share with you:
- I already finish chemotherapy at the end of March ( 6 cycles FEC-T) . after 4 weeks I did mastectomy and removing 25 lymph node. I know it's too much but they said it's better for you. I faced difficult time to hold and use mobile for a long time. I did exercises to keep my hand better with no swelling and lymphedema.
- they told me you will start radiotherapy after 8-10 weeks from surgery. all this time pass and I will start on Monday. 25 cycles then doctors will decide to increase or stop. no idea about hormone therapy yet.
when I finished the surgery I asked the doctor: am I cancer-free now?! he said it's not like that and keep silent. when I research on internet I found "remission" word, not cured, is that true? will I be as cancer patient (incurable disease) for all my life?
❤❤
0 -
Hi Hope and Proudtospin,
I’ve noticed most of the sisters here have moved on, since most are through with chemo and radiation treatments. Hope all are doing fine and as good as we can expect. So nice to hear you can exercise Iris - I have one more week of wearing the back brace, then I’ll try mild exercises. My back doctor told me I could have this back pain for a year. Great. It is slowly improving - I think.
Unfortunately Hope, once a person has breast cancer, it is an on going threat as we end up with a percentage of recurrence whether it’s a local one, or a metastatic reoccurrence. For example, I have a 13% recurrence rate. Some who were triple negative may have a higher rate, and some who never needed chemo, a much lower rate. So it just depends, and doctors can’t make a promise to you that it may never return. I try to look at it this way - every living person on earth has a risk of some kind of cancer. So this remission part of our cancer is sort of putting us back to where we started. One out of 8, one out of 10 and so on. You just have to hope you stay in the 80% area of no return. Breast cancer isn’t 100% cured yet, because cancer hasn’t been cured.Some articles are so misleading by using the word cured.
I started my Tamoxifen pills for a week and a half now and I’m already having vertigo. Not thrilled about that, but will give it more time. If it continues, I’ll switch to something else. Made my OM aware of it.
0 -
Blair, good to hear your back pain is getting better. It takes a long time to heal from surgery. I think you gave Hope very good advice. Sorry to hear about the anti hormonal side effects. Yes, give it more time. It must take the body awhile to adjust. Good thing there are several options.
I'm doing well. I've had some soreness and stiffness from radiation so I'm massaging my breast to break up scar tissue. Wish my hair would grow faster but don't have any bald spots so I'm grateful for that.
Proud it's great to go to the gym and exercise. I enjoy it too.
0 -
Hi Blair, nice to meet you again.
my consultant said your treatment plan for full cure! I understand that we will kill the cancer cells by chemo, surgery and radiotherapy then you will take hormone as preventive therapy. if you pass the first 5 years mostly the cancer will not back, if it's back it means this is new cancer. that what I understand from him. that's why we took all available treatment to reduce the chance of any risk + regular follow-up to catch any new things immediately.
I had lymph node positive so I can not do oncotype to test 21 genes. how can I know the percentage of recurrence? I'm like you, er/pr+ and her2 negative, grade 3. I think my er/pr percentage is high, more than 70%, actually I don't remember. is that good or bad sign?
It's bad to know that you have incurabe disease, no chance to be clean forever. I hope someone will motivate me and say you are wrong. cancer can cure and the statistics support this vision but ......
good news about your back pain. keep going 👍 do you know your ki67 and tumor size? grade?
0 -
Hope - for estrogen positive cancer the risks of recurrence continue past 5 years.
This quote is from an oncologist's twitter feed "Important. Patients need to hear and understand these numbers. Estrogen receptor positive breast cancer recurrence risk doesn't magically disappear at 5 years"
This is the study that shows that recurrence risk for ER+ continues: https://www.nejm.org/doi/full/10.1056/NEJMoa170183..."After 5 years of adjuvant endocrine therapy, breast-cancer recurrences continued to occur steadily throughout the study period from 5 to 20 years. The risk of distant recurrence was strongly correlated with the original TN status, with risks ranging from 10 to 41%, depending on TN status and tumor grade. "
Table 1 in that study shows the cumulative risk of recurrence during 5-20 years associated with the original tumor size, grade & nodal involvement.0 -
Hi moth,
so why most of the doctors and ladies here said the positive ER,PR are better than negative? it's bad news to know that. 5-20 years are too much.
0 -
Hope - triple negative has a higher rate of recurrence but it tends to recur early. Hormone receptor is better because there is something to try to prevent recurrence. There's nothing to prevent triple neg recurring other than surgery/chemo/rads.
Have you ever tried out the Predict calculator? http://www.predict.nhs.uk/predict_v2.0.htmlyou can enter the data and put it in as er+ and er- and you'll see the difference in statistical outcomes
Also, have you looked at the study talking about lifestyle modifications which prevent recurrence? http://www.cmaj.ca/content/cmaj/189/7/E268.full.pd...
All we can do when we're done is to live the best life we can and hope for NED - "No Evidence of Disease"
0 -
Not sure either type of cancer is better but they are different. My oncologist told me triple negative has a higher rate of recurrence than hormone positive cancers during the first five years. The first two years are particularly treacherous for triple negative. After five years, triple negative recurrence rates drop to almost as low as those you have never had cancer. There are definitely more treatments available for hormone positive cancers. All of us wish we had neither one that's for certain.
0 -
Hope - my tumor was 1.9 cm (barely within the 2cm size), and my Ki67 was stated as 60-70% as high, but not that pertinent to worry about, - so I was told. It’s one aspect I never quite understood. I was a grade 3, but at least it didn’t invade my lymph nodes. Just be glad you are ER/PR positive and HER negative. HER positive is harder to treat, and I think that alone makes the recurrence rate a little higher. This disease definitely sucks!
We all carry a risk of future possible recurrence regardless of our individual variables. I’ve seen some people at this site who had pre-cancerous conditions, and later had a more advanced cancer develope in their breasts. Some early stagers have had a recurrence of metastatic cancer occur after 7 years (having all previous treatments).Metastatic is bone, liver, brain or lung cancers. Those are the biggest fears that we carry from having breast cancer. Again, we have to not let it drive us crazy and hope for no return. Many have avoided a recurrence for over 25 years.
Just stay positive and try not to worry-it’s all in God’s hands what happens to us.
0 -
PS - Moth - thanks for the article on lifestyle modifications. I need to get moving - as long as I don’t break my back again doing it!
0 -
i have to admit i was A very early stage, did all suggested and no way did i ever think i would reoccur, it was 9 years and yeah, mets, now on chemo and no fun
0 -
iris, what was the treatment plan the doctors suggestedfor that initial cancer?
0 -
My initial breast cancer turned to metastatic breast cancer...7 years later...to my bones. Chemo for several weeks. I'm now on an oral chemo combination of Ibrance/Letrozole. I have severe neuropathy from the chemo and cannot walk without holding on to furniture etc. just to get from room to room. Two months of medication for that hasn't done much so far. I have an oncology appointment tomorrow and hoping my meds can be increased. I was told neuropathy is the hardest side effect from chemo to treat. It's just a matter of trial and error.
Nice to "see" you all back on the board. And, happy to hear all are doing well.Hope
0 -
star, i did 3lumpies, radiation and then 5 years of aromasin. About the time i finished the aromason was when folks started talking 10 for the aromasin, my onc did not think i needed it
Dang
Hope...good luck with your doc appt, great if they have a solution for your problem walking and the stupid nueropathy! My next onco visit is on the 20th, nueropathy and my pealing skin is goin to be first on list for my doc
0 -
Hi, all! Glad to hear updates from a few members of the group, though sorry that some are dealing with significant difficulties. I'm sending good thoughts that things will improve for you wonderful ladies.
I myself am still recovering from the two surgeries I had to remove my problem port and replace it on the other side. I bruised a lot from the reinstallation last Wed and could hardly lift my right arm 2 days afterwards. So took an extra day off work Friday.
I was happy to have the new port for my infusions on Mon. Scheduled appointments with a nurse navigator to discuss my survivorship plan and then a counseling session after that, so it was a full day. I also finally started Arimidex, per my MO's instructions. (Had been giving my body a break until surgeries were done.)
Bruising is still there, but a bit better each day. I'm finding it a bit of a push to do the last hour or two at work due to fatigue, but am managing it so far.
Meeting up with a girlfriend for dinner and a jazz show this evening, which will be fun but probably also tiring. Fortunately I have nothing much planned for the rest of the weekend.
0 -
I found this greaaaaaaat news today!!! the treatment of the last-stage of breast cancer is in progresses. see this 🎉🎉:
https://www.nature.com/articles/s41591-018-0040-8
I want to ask you please, if the receptor er,pr are more than 80% in your pathology report, is that good or bad sign and why?
0 -
Magari - glad to hear your port surgery went well. I'm still bruised from last October ‘s surgery due to blood thinners. Bruising all over my body is what I have to live with the rest of my life due to these awful blood thinners. I like hearing that you have the nurse navigator helping you with a survival plan. How many infusions are left to do?
I had mild vertigo all day, so I called my OM and she suggested I quit taking the tamoxifen over the weekend and then call them Monday and let them know how I’m feeling. I hope this side effect isn’t on going, but I really want to be taking Arimidex, or something different other than tamoxifen. It’s worst side effect is clogging of veins! I don’t think it’s the best for a heart disease person such as I. Not sure why she wanted me to be on it - had to do with my osteoporosis and osteopenia. I’m also experiencing hot flashes, but not too bothersome.
Hope99 - I don’t know how the percentages work with the ER/PR receptors. As long as they are positive - that’s all good is all I know. There’s a lot in the clinical details that I really don’t understand.
Nonahope - sure wish the neuropathy would ease up on you. It’s got to be hard to have to grab on to the furniture just to get around. I now have a fear of falling knowing my back is fragile. Never thought I could collapse my back that easily- when I didn’t even think my fall had anything to do with my back pain. I think it was initially cracked and collapsed days later after my fall. Anyway, I have to be extra careful with myself too getting around or doing things. I grab my stair rails tightly as I go up and down. I need to get back to my weekly exercises too. Getting old along with breast cancer is so depressing, but we got to go forward the best we know. Hang in there!
0 -
well i finished up with both physical and occupational therapy, love those gals as they have helped me get up on my feet and walk with the rollator. I can walk short distances without assistance but usually use a cane. The therapists were amazing, got a bit left of medicare and they suggested calling for a tuneup! The end of summer. I strongly suggest therapy to anyone having trouble walking.
After stubbing my toe, i finally saw foot doc the other day and he trimmed some of nail so it can now grow out.
0
