Starting Chemo June 2017
Comments
-
Hi all,
Thank you all for your well wishes and calming comments last week in regards to my CT scan. The next step was a Nuclear Bone Scan (had it done last Friday). The hip is clear but the radiologist sees something in one of the ribs in particular. Next stop - MRI. This is a very long and stressful waiting period. I am trying to remain as positive as I can be. From the start of my dx I was told it was Stage I and there was no lymph node activity found...but...now I let my mind wander to - if something is found on the rib(s) - that makes me Stage IV. If that is true - how would I have gotten there? My nurse navigator said it is highly unlikely it is cancer ESP since I just finished chemo. We are going with that at this point. I pray that God will give me a chance to be cancer-free. I have plans!
I am hoping to get the MRI done this week so I can know for sure that I am cancer-free. MS Lin - thank you for sharing your story on your scans. It was helpful to read that it happens.
Prayers to all,
Lilsuz
0 -
HapB I'm so sorry to hear you've been going through so much. I hope the doctors can get you back on track. Hang in there...nobody here is alone in this fight. This place draws us back for a reason -- whether to share good news or not so good, lighten a heavy load with some humor or shed some sadness with tears.
LilSuzq waiting is hard. I'm waiting for my surgery date to get here and I feel the anxiety creeping up each day as I wonder what the official findings will show. I am not staged yet...just guessing at II because of my lymph node. I hope you hear positive news soon.
0 -
Lilsuzq, Try not to worry. Hoping you can get that MRI and get this off your list of things to think about. All will be well.
I met with my BS this morning. I will def have all my remaining lymph nodes removed on 12/1 (and the port removed -- hooray). Not looking forward to it, but I knew it was the next step after chemo. I am just going to try and enjoy the three weeks I have until then and try not to worry about all the "what ifs."
Peachy, Hang in there! Try not to be anxious. Remind me of your surgery date? I cannot remember, and I cannot scroll and look because I am typing.
(How long can we use the excuse "chemo brain?") 0 -
HapB, I had that question for her. Ideally, yes -- the chemo should have destroyed any cancer cells in the lymph nodes. But, until she removes them and they are sent to pathology, she cannot be 100% sure. She says she expects the chemo will have destroyed any cancer cells. She will also coordinate me seeing a Lymphedema Specialist to make sure I have her on my team whether I develop lymphedema or not. THAT is my biggest concern in this. She said it is my choice to go through with this, but that is their standard of care when 6/7 were determined to have cancer. I realize it is probably wise. If I don't do it, then my fear is it would be too late later to do anything about it if it spreads that way. Hopefully, we got started on chemo so quickly that it didn't have time to spread. I guess it just takes one rogue cell.
Needless to say I will be chillaxing in December.
0 -
My surgery date is Monday 11/20. The Monday before Thanksgiving. I will be laying low and recuperating so it may just be turkey soup for me! I'm sure there are people that would give an arm or a leg to spend the holiday in their pj's on the couch watching the parade and not stuck in traffic or cooking. Not sure they'd be ok with surrendering a boob for it though!
Kim, yes, enjoy the reprieve! Is it possible you will need radiation as well?
I won' know the extent of my node removal until I wake up in recovery. Then after that, they'll determine if radiation is also needed.
Sending hugs to HapB. One day and one step at a time.
0 -
Prayers for HapB new meds, Peachy surgery, and Kim surgery also!
0 -
Ok, Peachy. Will say special prayers for you for the 20th. (I am definitely going to have to have radiation. That's already been determined. Should start that right after Christmas/NY, I am hoping, as they said 4 weeks or so post this next surgery.)
Really tired tonight. I took a nice, warm bath and feel even more tired.
I think that means a really good night's rest. I wish the same for all.0 -
PAULETTE, I believe these days the evidence shows that arimidex and others in the same class (I think they call them aromatase inhibitors) work better than tamoxifen for post-menopausal ladies. So far I am having no side effects from that. But if my be comultive. I've only been on it for a moth.
Out on the sailboat this weekend traveling to South Seas Resort on Captiva to meet up with other boats. Life is getting back to normal for my husband and me. Have a good weekend everyone.
0 -
Just had my apt with my oncologist, that lasted all of 3 min. I went in last week for my echo since chemo ended 9/15. Now that I will be having my bilateral mastectomy on 11/17 with deip flap restoration, he doesn’t want me to start tne heceptin again until a month after tne surgery. I had to bring up the fact, what about my echo results? Which were fine he said, no problems. My wbc and rbc counts are low( I read that myself on my paperwork, he never mentioned it).
Good news in the insurance front,they called yesterday and they will accept my choice of plastic surgeon and cover him in network! Now to get my Thanksgiving foods purchased, my kids will cook it and a little Christmas shopping out of tne way ready to get this done with 0 -
LTWJ, It sounds like some positive things are happening, and you are moving forward. I love the idea of all the holiday planning.
Julia, Love that life is getting back to normal for you. Sounds fabulous with the sailing. Have fun and be safe!
0 -
Hi folks, I have been off these boards for awhile in recovery mode from my TE/implant exchange surgery last Friday. All went well and I am so glad to have that third (last?!) big thing checked off my cancer to do list. Herceptin and Tamoxofin going forward which I seem to be handling fine.
Sending lots of hugs out to everyone as you are dealing with your triumphs and obstacles. Have a wonderful weekend!
0 -
Hey ladies just thought Id check in and see how everyone was doing..so it looks like I am scheduled for my bilateral mastectomy November 30th..great news though it looks like my MRI is showing Complete Response/No Evidence of Disease...has anyone else had this after chemo and before surgery? Did you still have the surgery, and possibly radiation? I will be asking my doctor these same questions as I simply read the results on my patient portal...I am also HER 2 positive which weighs heavily on any decisions I make on this journey..I am so excited that chemo worked so well but am apprehensive for some reason to jump for joy for some reason.. I am so relieved though to see how my body responded..loos like most of us are just about done with chemo if not all and are doing pretty well for the most part..I will also have to have my gallbladder removed due to a polyp they found during an ultrasound so hopefully that is nothing..I have a little muscle fatigue leftover, and some rib pain here and there but overall I feel pretty good..
0 -
Hhuey, my breast MRI came back completely clear so I chose a lumpectomy and radiation. I had the surgery and the pathology came back tnat cancer was still present. So now I’m having a bilateral mastectomy on Nov 17,but hopefully no radiation. I had no nodes affected but I still won’t believe no radiation until the surgery is over. My oncologist assured me I had a complete response to chemo and my breast dr said tne mri was clear. Neither of these were correct. Now they both say triple + is sneaky.
Except for the neuropathy I’m feeling pretty good and am able to work. I will be off now until tne new year recovering.0 -
Hi all,
Glad to hear everyone is wrapping up treatment and moving forward with surgery or healing from treatment.
Finally got a clean MRI - had a CT scan with concern, a bone scan with new concerns and finally a clean MRI. It seemed like a long process - the waiting for test results. Such a relief to be able to breathe, relax and heal.
Prayers for all and thank you to all for being my support group.
Sue
0 -
T-Sue, Sounds like things are going very well for you! Love to hear it!!
hhuey, NED sounds wonderful! I can't speak to that, as I haven't had a breast MRI. I have a brain, chest and neck MRIs tomorrow morning. 3 hours. I hope I can relax. These are a 2-year follow-up with my neurologist, as she had been monitoring me for MS/transverse myelitis. She never diagnosed me with it, just had some weird symptoms way before BC. She thinks it will be good to get a baseline post chemo, and I agree. (In case this stuff metastasizes later, we can have something to compare.)
-- Yesterday I had muscle fatigue/pain like you wouldn't believe. Seems a good bit better today. The weather is crummy - sleet this morning and rain, but yet I do feel better. I hate to know you are having it, but it kind of makes me feel like this is "normal" two weeks post chemo. Hopefully, in a few more weeks a lot of things will work their way out of my body!!
LTWJ - I am still suffering with neuropathy in fingers, but today it has seemed slightly better. Even my demarcated nails are growing quickly and looking half better. Looking like a baby ostrich on top of the head, too.
Lilsuzq - How are you doing on Tamoxifen? Hopefully just as well as T-Sue. I will find out Nov 28th when they will put me on that.
0 -
Under the guise I can't catch a break ( after tne insurance finally okd tne plastic surgeon ), I had to have a CTscan for th plastic surgeon and they just called saying there were questionable findings on my kidney and abdomen so they want an MRI before surgery. Then they called back saying my breast surgeon wants to go ahead with tne surgery on Friday then deal with the MRI during recovery. I'll be obsessing about this now all through Christmas
My husband suggested skipping tne reconstruction so I can recover quicker and find out what's going on, then go back for reconstruction later if it's all cleared. This is all just so crazy.
I have an apt with my breast surgeon at 3 for Pre-Op but we'll be talking a lot about this new part
0 -
LTWJ, I am sorry you are getting all these unexpected findings. It could be absolutely nothing to worry about. Ask all the questions you can and ask her if she thinks it is perfectly ok to wait for the MRI. Stay strong and hopeful. Let us know what what your BS says. Big hugs.
HapB, I completed the 6 MRIs - 3 with and 3 without contrast. Man that made for a long 2.5 hours, but I thought it would be 3 hours, so I guess 30 mins was a gift. I had such lower back pain from being on the table that it finished just before they would have had to pry me off...lol Seriously, I was pretty calm over all, though the knocking just about gave me a headache. I treated myself to a Chick-fil-a.
0 -
LTWJ so sorry the rug keeps getting pulled out from under you. I hope the doctors can work together and with you to get you the tests needed quickly. Hang in there.
Kim 6 MRIs at once-Yikes. Glad it's behind you and you treated yourself to some chicken.
HapB hope you are feeling better and your BP has settled down.
JuliaJazz Hope you had a great time on the water. Captiva and Sanibel are gorgeous!
T-Sue sounds like you are kicking butt. Keep on checking those boxes!
Lilsuzq WooHoo! Happy you got a clean MRI. Exhale.
My hair seems to be coming in a bit now. Still look bald from a distance but up close, there is definitely hair. I realized there is a bright side to having no hair right now. When I'm recovering from surgery, I don't have to deal with washing it! Silver linings.
Neuropathy is annoying. My toes don't seem to be getting any better--maybe worse-- but I'm trying to ignore it. My right hand woke me up the other night which was new. Wasn't just tingly..it burned. Kept me up for a bit before I could fall back to sleep. Didn't like that at all-especially since it was my right hand. Hmph. I took one of the Xanax earlier that evening as a 'test run' before surgery date as suggested by the nurse. I wonder if it was a coincidence or if it may have had something to do with the hand acting up since it hadn't happened before. I did not feel anything from the Xanax. Maybe because I wasn't experiencing any anxiety to calm but honestly, I forgot I took it because I didn't feel any different.
Quick question - How are you all keeping paperwork organized? I've been keeping mine in plastic pockets. It's organized but I feel like I need to get better about it. Do you use binders with tabs/labels? Does each procedure/results get its own tab? Do you have a 'master page' that lists everything chronologically?
0 -
Time on the water was great. Felt really "normal" for the first time in awhile. Florida in November is pretty nearly perfect. Ate a little too much during the dockside festivities so its back to the diet today. Good wishes to all of you going through treatments or side effects right now. I will be thinking of all of you today.
0 -
Julia, So deserved to feel "normal" again by enjoying the water, perfect weather and much food! I say let the holiday feasts begin!
Peachy, Always look for those silver linings. I look like a baby ostrich with the fuzz growing in. Hubby says it is growing a little each day. It is easy with a quick wash towel dry. I agree that will be nice to not have to worry about post surgery. Interestingly, and maybe I should not admit this, I occasionally forget my natural deodorant (gave up my decades-long fav that had aluminum) and I can't even tell. I wonder why that is? I was never one who really sweat much, nor stunk naturally. Just find it interesting. Leg stubble comes in but not as much as before. Underarm hair is softer and much slower-growing. Fine by me! Come on head hair!!
It definitely has the mix of red and light (I'm thinking I see gray, too.) As far as organization of these one million reports/medical statements, I just put them in a medical file in date order. Nothing too organized, really.
Neuropathy in my fingers seems to be improving slightly. Both my large toenails looked bruised, and one oozed last night. Fingernails, while growing out the ugly chemo stains still have a ways to go. Having to keep a light pink on them, and I continue to do the OPI Nail Envy. Everyone has told me the neuropathy will pass, so hang in there, Peachy. I trust it just takes a good while to get all of this out of our systems. My energy is improving, gradually.
0 -
Peachy, I have a binder and section it off per services provided (all chemo together) (port stuff together) (MX paperwork). I keep a section just for the dx and pathology report because I look at this frequently. It's not professionally filed but, I know where things are when I need to look for them. I also keep my wristbands for each chemo visit, as another milestone crossed!
Melanie
0 -
Kimpossible, my finger neuropathy seems to be getting better. My feet hurt at night and when it’s cold. 3/4 of both of my feet were completely numb but now they hurt more as they are waking up, I take that as a good sign.
Has anyone changed Oncologists while in treatment? I really don’t like or trust mine. I thought since all I have left with him is tne heceptin every 3 weeks that I could just do that and ignore him but last week I went for an apt after I had my echo before I could start tne infusions again, and he couldn’t even look at me ( after he assured me the chemo was a complete success and I was cancer free at my last apt and I obviously was not after my lumpectomy). He never even mentioned the echo, I did after he got up to go, and he hurriedly looked on the computer, and he obviously never looked at the report before that. He said looks good, after 30 seconds. I have no faith in him at all now. We have 3 TX Oncologies within driving distance and he works at 2 so I would choose the other one he doesn’t go to. I’m not even sure how to go about it.
As for my 2 new spots my breast dr said she had an obgyn oncologist look at them and say they’re most likely tiny cysts and to look again in a few months. My breast dr said she’d get me an mri asap to relieve my mind if stressing about it. Just waiting for tne apt now.0 -
LTWJ, Thankfully, I have been very pleased with my care. You should definitely feel comfortable with your doctor(s). Since it seems you have choice in the matter, maybe research your other options. I am sorry you are dealing with this.
0 -
Ltwj - you should find a doctor that you trust and feel comfortable with.
HapB- I pray that your heart problem will solve soon.
I know I don’t belong to this thread but I always lurk here so I want to say something to both of you,
0 -
A really interesting blogpost on hormone blocking drugs
http://nancyspoint.com/certain-breast-cancer-patients-extend-endocrine-therapy-beyond-five-years/
0 -
Julia: Interesting Study. It contradicts the study that came out saying that staying on the hormone therapy drugs longer than five years doesn't make any difference. What to believe? I started my Letrozole two weeks ago and for the most part the side effects are starting to disappear. I still have a bit of muscle soreness but I think that's also left over from the chemo.
Only 7 more radiation treatments to go. So far, I only have two very tiny blisters that have developed within the past two days. The techs were quite surprised I haven't had more reactions as I have fair and sensitive skin. I followed HapB's advice with no lotions, soaps, or deodorants. No real fatigue to speak of and I'm a little more tired than I was at the start of rads but nothing compared to chemo fatigue.
I met a gal the other day coming out of radiation whose last chemo was Sept 19 and she had at least an inch of hair growth all over with one bald patch left at the front. Huh! I'm still as bald as they go except for leftover peach fuzz which my hair dresser shaved off the other day. Now, I'm really shiny bald. It was a little sad to see it go since I've been nurturing all that peach fuzz along for two months hoping that it would grow into something. Oh well!
Glad to see everyone is coming to an end with chemo. When I told the nurse practitioner that I'd never do that again, she said it's like having a baby, you forget the pain after awhile. Uh huh!
For those going through surgeries or more tests, my thoughts and prayers are with you.
0 -
Pink, my oncologist tends to agree with the study, but she say let's see what the data says after five years. I've been on Arimidex for two months and really have no noticeable side effects. My hair is 1/4 inch long now but I do have some worrisome bald spots. Time will tell. I will take a pic in another week or two. So glad your radiation treatments are going well. I didn't have to go through that.
0 -
LTWJ It's important to feel comfortable with your doctor. Once you said you lost trust, I think that means it's time for a real heart to heart with the doctor about how you are feeling regarding your care. At the end of it, you may regain trust or validate your desire to find another oncologist. Don't suffer doubt in silence.
Kim the hot flashes moisten me up. Deodorant or not! My nails are ok. I am taking Biotin daily. That may have something to do with it. I do need to wear polish, though until the discoloration grows out.
Thanks for the filing suggestions. There are online reports I can access, but I still like to have the old fashioned paper. You know, in case the internet implodes.
I saw the article on extending the hormone therapy. I'm afraid that part or the journey is another crap shoot as far as side effects. Just like chemo. Everyone responds differently. Ugh.
0 -
My breast dr got me an MRI appointment yesterday because she understood that I would be so worried during my 6 weeks of recovery and it would drive me crazy. She already had a obgyn dr look at the cat scan and she said it was nothing to worry about BUT the plastic surgeons nurse who originally called me to tell me about these spots was already referring me to an ongyn oncologist and a nephrology oncologist( her exact words) so she got me the apt. Took 2 hrs of MRI work to get it all done and they are both cysts!!! I’m so happy and my husband and I could finally eat and sleep yesterday 😅
I have my bilateral mastectomy with Diep flap reconstruction tomorrow morning! So glad to be getting this part done too. My kids are all splitting up tne thanksgiving meal duty so that’s great too. I wrapped some gifts last night and will finish cleaning tonight. I’m working today to keep myself busy 😊 my clothes are falling off me, I’m still 20 lbs lighter than before chemo but I tell my husband that the anti hormonal can add wait so no new woredrobe yet . Hope everyone has a fantastic holiday, I’ll be off recuperating for awhile!
0 -
LTWJ, great news! So glad you got some resolution on those cysts. Sending you lots of strength and healing for your BMX tomorrow. Rest up!
0
