Jul 22, 2016 07:03PM WenchLori wrote:
Hi MFalabella. me, me, me! I get my port placed on 7/29 and that's all I know at this time.
Regimens, side effects, and support from others going through chemo.
Posted on: Jul 22, 2016 02:31PM
I don't have the details yet, just wondering who else is in my boat with me.
Posts 1 - 30 (2,013 total)
Jul 22, 2016 07:03PM WenchLori wrote:
Hi MFalabella. me, me, me! I get my port placed on 7/29 and that's all I know at this time.
Jul 22, 2016 07:07PM MFalabella wrote:
HI lori, keep me posted love, and I will do the same. <3
Jul 22, 2016 10:57PM sensitivehrt wrote:
I just made the decision today to proceed with chemo. I know I'll be having 4 rounds of TC 21 days apart. Waiting for the MO office to call me back with a date for chemo class and a start date.
Jul 22, 2016 11:40PM sensitivehrt wrote:
honeybdgr- sounds like we will almost be on the exact same timeline. I'm going to try and push my start date to that second week in August, so I can give work 2 weeks notice before going on leave again :(
Jul 23, 2016 04:19PM NIKKIROSE wrote:
I am starting chemo on Monday or Tuesday of this coming week. Diagnosed beginning of June and have gone through all the tests, Breast MRI, CT Scans, Bone Scan. Insurance wouldn't okay a PET or BRAIN scan which I am not happy about. Doctors recommending Chemo before surgery to try and shrink the 5cm mass. Hoping it works the way they want it to.
Jul 23, 2016 06:16PM WenchLori wrote:
Sensi~ I'm sorry to see you here. You've been thro so much already! (Gentle hugs)
Hopefully I can start about the same time as you girls. I'll be doing AC 21 days X 4 cycles then I'll have Paclitaxel a week X12 doses. Anyone else having the extra 12 week treatment?
Nikkirose~ you have my sincere sympathy where insurance companies are involved. Mine took 3 months to ok my DBMX. But approved my chemo in 24 hours?? I have my PCP working on my radiation approval now.
Jul 23, 2016 09:33PM sensitivehrt wrote:
WenchLori- I'm sorry that you have to be a part of this thread also. I'm glad that they were able to approve your chemo and that you don't have to wait again. (Gentle hugs to you as well)
Jul 24, 2016 07:32AM - edited Jul 24, 2016 07:34AM by Hopefloatsinyyc
I was expecting to start in July... But it looks like August will be my month. Meeting on Wednesday to discuss my regime and frequency- and my oncologist better be ready! I am coming manned with questions and data! I will not be that patient who nods and accepts whatever is suggested- thanks to this place, and a lot of medical journal reading this last 2 months since diagnosis, I am definitely going to be more active than passive in the conversation. Just hoping he listens and is willing to work with me to develop a plan I can be confident in! Wenchlori, one of the protocols that are on the table has the additional taxol for me as well)
I preordered my wig and its sitting waiting for me until the day I need it, I have very long hair and suspect the day I start losing it will be very traumatic... So I'm thankful that they actually provide the support to shave my head and fit the wig there in a private and comforting setting, since I don't think I could do it myself, and I can't imagine wanting someone else there as it happened.
So appreciative of these boards, and this group- we all have a tough road ahead, and it will help SO much to be able to lean on one another.
Jul 24, 2016 11:27AM MFalabella wrote:
Hopefloats and all.
I feel ya, I have tons of questions, and may also find myself starting in August. I hope and pray for all of us. Gentle hugs to all.
Jul 25, 2016 04:16PM djm71 wrote:
Hi everyone, add me to the list for starting chemo in August. All I really know right now is that it will be AC+Taxol for 16 weeks. Spaced 2 weeks apart. I am SO scared. I just found out today that I need chemo. Oncotype came back at 52. My MO ordered a heart scan and a PET scan and also I have to get a port put in. I look forward to leaning on you ladies and feel free to lean on me too!
Jul 25, 2016 05:55PM Nell19 wrote:
I'm starting on this coming Friday, July 29. Four rounds of TC. I'm apprehensive, but prepared.
Jul 25, 2016 09:50PM Lifeisntover wrote:
Hi all...so thankful for this place. Hope you don't mind if I just vent for a minute... I was diagnosed Ductal In Situ in my left breast at the end of June, then double mastectomy/reconstruction on July 8. Approx 10 days to prep. During the course of the mastectomy, the surgeon discovered a malignancy...it was less than .02mm, separate from the original tumor, drifting towards a lymph node. I meet with Oncologist on August 2, and am worried about the jump to chemo based on that tiny speck that isn't medically recordable.
Still recovering from all of the reconstruction and am disappointed because I naively thought I would be "done," with all of this since I selected the aggressive surgical route. For me, the diagnosis to the operating room happened so fast and I wasn't prepared for the emotional impact; the ups and downs of being grateful for what's happened to being very emotional.
I'm a single mom to a wonderful 12 year old and have a ton of support with friends and family, but, man, this stuff can be isolating. I can get lost in the data, and locked in my head very easily. I just may be joining the rest of you who proceed with chemo in August. Thanks for having me...life goes on!
Jul 26, 2016 06:23AM WenchLori wrote:
Good morning everyone, how are ya'll doing?
Lifeisntover, I know just how you feel! I've been told over and over I wouldn't need chemo or rads by my BS. Surprise!! I've requested for my BS to place my chemo port this Friday. I hate that I have to do chemo/rads but its better safe than sorry. All I want is for my BS to understand that she read path reports more thoroughly before telling anyone else they don't need chemo/rads. My oncologist was totally floored that she would tell a patient that. Not to mention the words my PS had to say about it. I'm so so happy I didn't go from DBMX to immediate implants. Then I'd be really pissed! My PS says my TEs will "fight" rads better than an implant. I went with the DBMX in the first place as I already had implants from a previous reconstruction procedure and was told implants and rads don't mix.
I hope this heat isn't getting everyone down on top of everything else we have going on. It sucks seeing clear sparkling pools and not being able to jump in and cool off. Hopefully my PS will clear me to swim soon. "Please, just let me sit in the water!" "No, sitting leads to wading to your knees which leads to wading to your waist and the next thing you know, your swimming". He sounds just like my mom!
Until next time... Tata
Jul 26, 2016 09:46AM Karou wrote:
Hi just started first chemo today so will be getting next one in Aug I am on FEC-T ( although I think it should be called Feck-it
Jul 26, 2016 11:17AM Karey59 wrote:
hi everyone. As far as i know I will be starting chemo sometime in august. I am at home recovering from hysterectomy had Lumpectomy in may and finally will get chemo port as soon as gynecologist oncologist says its ok. I am glad to find this group, don't know any specifics of my treatment yet. I am trying to be strong but this sure is a nightmare roller coaster ride.
Jul 26, 2016 12:07PM sensitivehrt wrote:
I'll be starting August 10th at 1:30.
Jul 26, 2016 12:14PM MFalabella wrote:
I still dont have a date to start chemo, or even to get my port. I do see on onc for a consultation on the 8th, even though i have chemo first. I will keep you all in my prayers. xoxoMichelle
Jul 26, 2016 01:46PM MFalabella wrote:
Karou, how was the port, did it hurt?
Jul 26, 2016 08:22PM WenchLori wrote:
I had my PET this morning and I'll have my ecocardiogram on 8/2. After we get the results of the eco we'll schedule my first chemo treatment. I'm told the oncologist I have doesn't waist any time and to expect chemo to start the day after he gets my results. He told me on our first visit we've already lost 4 months and we need to start ASAP. I agree...
Jul 27, 2016 05:52PM Hopefloatsinyyc wrote:
Well, I met with my MO for my initial appointment today, manned with a ton of research and questions compiled from the knowledge gained here...and I think at the end of my 4 hour appointment, we were BOTH impressed with the other HAHA... He was "warned" by his nurse who met with me initially that there were some drugs i would not accept as part of my protocol (unless he could provide a great reason why I needed to reconsider), and had some questions and opinions that I wanted to contribute to our discussion. Some MO's may have not liked this approach- but mine welcomed it with open arms... in fact, I think he actually appreciated that thanks to these boards, I arrived the fact based concerned and real concrete understanding of not only my pathology, but how it is often treated. He started by simply saying "You sound like you have a lot of information- how about you share with me what you know, and how you believe this part of our treatment will look, and then we can talk about that and make a plan.
In the end, after lots of discussion- we came up with my treatment plan= 4 rounds of AC followed by Tamoxifen therapy. He listened when I voiced concern about taxanes and their severe side effects- and agreed that although he would traditionally order DC for my pathology, he respected my concerns. When he knew that as as single mom of twin boys that works full time, not dragging out this step of treatment into endless weeks of chemo; he agreed that CMF or FEC-D would only result in additional cycles that would simply be over kill... and even when I raised concerns about the anthracycline and its possible impact on heart health and leukemia, he talked me through the risk, and agreed to have the cardiac oncology team monitor me via EKG to ensure my heart was strong. Most of all, he was on board to make the best choice for me giving me the best chance at being here for my young kids for a long time.
One difference to my prototcol that he is supporting me on, was my choice to eliminate all steroids from my treatment plan. I hate the SE from them, and I simply didnt want to add that to an already overwhelming amount of toxicity. I was concerned however, pain and nausea. He assured me that AC would be far easier to handle from a pain standpoint than the original plan of DC... so he felt confident that would be fine- and if necessary, he would call in a prescription if pain was terrible- but didnt see this happening. He did however, provide me with 4 different nausea meds which he thinks will easily replace the steroids! Thrilled!
I will have my port placed some time in the next week, and my baseline EKG on the 4th.. and will have my first transfusion on August 19th.
Looking forward to getting things going, but thankful for the next 3 weeks to ensure I am ready for the next 3 months! Thankful that there will be a group of us all going through this together.
Jul 27, 2016 06:08PM MFalabella wrote:
Good for you Hopefloats, it is true Knowledge is Power. I am glad you have a great MO who really listened to you and your ideas, and took your kids into consideration. Congrats, and God Bless all of us
Jul 27, 2016 06:27PM WenchLori wrote:
Hopefloats, that's awesome that your MO is listening to you and taking your wishes into account during your treatment. MOs like that are few and far between. I hope my MO will be just as accommodating as yours. I'll know more on Monday, I hope!
Jul 27, 2016 06:31PM djm71 wrote:
hopefloats, I'm encouraged that your MO really listened to you. That doesn't seem to be the norm most of the time. Sounds like he listened "for real" and not just to humor you. That's awesome!
I've got several scans coming up before chemo. I'm not sure if that is normal for most people. It made me very nervous that he ordered so much. I guess I just wasn't expecting it. Hopefully they will all be "good" and I can move forward with treatment.
Jul 28, 2016 05:59PM WenchLori wrote:
djm, my MO has me doing a lot of scans too. He assured me it was normal to have so many tests done. It finds any other health issues we may have that could do more harm than good during chemo.
I have my port placement first thing in the morning, then I met again with MO on Monday. One step closer to getting this next step on the road.
Jul 28, 2016 06:18PM Hopefloatsinyyc wrote:
good luck with your port placement tomorrow Wenchlori!
Jul 28, 2016 06:56PM sensitivehrt wrote:
Good luck tomorrow Wenchlori! I have chemo class tomorrow and first treatment is set for the 10th at 1:30. No port for me, since it 's only 4 treatments, they plan on using my veins. Hope they work, they had a hard time finding a good one during my BMX.
Jul 28, 2016 07:46PM WenchLori wrote:
Thank you Hopefloats and Sensi! I have a few classes scheduled but not one for chemo yet. Maybe they'll give that info to me tomorrow??
I've been trying to remember where I read to dunk your nails in ice water to help save them before going to chemo. Anyone know?
Jul 28, 2016 08:01PM - edited Jul 28, 2016 08:03PM by Hopefloatsinyyc
WenchLori- yes.... It's called "icing". One of my friends is an onco nurse and she suggested it for sure! She said that when you arrive for transfusion day, you let the nurses know you want to ice, and they will show you where the ice machine is. Bring some ziplock bags along and fill them with ice... And then she suggests oven mitts! Place a bag of ice in each, and then your hands inside making the ice concentrate on the tips of your fingers... Do the same with your feet either laying bags on top of your toes, or finding some big slippers and doing the same as the mitts. She suggested chewing on ice too, as it helps with mouth sores. Also said that chewing gum or sucking on a candy helps mask the taste that can occur when drugs get pushed into port. Also painting nails dark helps save them apparently. My oncologist said less oxygen to them the better so is fine with my continuing to get gel overlays so long as my manicurist is very careful with sanitizing and not using cuticle cutters.
My chemo class is on the 15th.