Starting Chemo June 2017
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I got a flu shot shortly (~3 weeks) after completing chemo. I did check and get the blessing of my MO.
Below is a cross post of what I put in another thread re: my treatment path. Some of you may want to join that thread, too. It is for those diagnosed in 2017 and looking forward to 2018. It gathers people from the different "monthly" threads in one place.
https://community.breastcancer.org/forum/152/topic...
I've had 2 conversations this morning. First was with RO and he said HER2 status would not change radiation options and prognosis is still very good either way. He even said if it does end up being HER2+ I could get the additional chemo and radiation simultaneously. He said HER2+ in the past was considered a bit more aggressive, but now with drugs available to treat , not so much.
My MO's office called after that conversation with a slightly different recommendation. For some reason the FISH test is being re-run and I'm told results should be in early next week. She said if the HER2 status does change and come back as +, she would want to do additional short term treatment prior to radiation. If HER2- is confirmed, proceed right to rads. Sounds like she recommends rads either way but I'll confirm that early next week.
So...I'm going to take this weekend to try to NOT think about this and wait until I at least get those results before asking each dr why they differ on the timing of treatments (Herceptin first vs. Herceptin/rads concurrently).
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HapB...no, I have not had Herceptin yet. Until the pathology from the mastectomy, the tumor was considered HER2 negative.
I will be very disappointed if I need more chemo at this point. I've mentally put chemo behind me. If it causes the hair that I have growing back to fall out again, I will really be bummed.
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Thanks HapB. I'll try to relax. I may have my terms mixed up in my posts. I say "chemo" but I realize Herceptin is not chemo. But the infusion part brings my thoughts back to chemo.
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Thanks for the link to the "diagnosed in 2017" Peachy. That one wasn't on my radar. I wish you a stress-free weekend!
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so I seem to have developed some cording in my right axilla from surgery which is making my post bmx stretches very painful. I am trying the best I can but I'm hoping my arm raises far enough for simulation for rads on friday..
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Kim, so glad you are feeling better today.
Susie, my port was removed in an outpatient clinic with light sedation.
I am feeling well but dealing with moving my dad to memory care while my mom remains in assisted living He i exhibiting some behaviors that they are better equipped to deal with. I think it will be a very challenging transition. Just how I wanted to spend the holidays. But I think once he settles down he will be in the right place. I may not be on here much. Happy holidays to all.
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Julia, I am sorry that you must move your father to a memory care facility. It is a sad and difficult decision to make. My family has been through this experience once before, and it was hard on everyone. I pray for a smooth transition for you, your mother, and your father.
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Thank you, Hershey Kiss. You are so right, it is very sad, even though I know it is the right thing to do.
Julia
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Julia, thinking of you during this time, I am sure it is/was a difficult decision to make. Please remember that you are doing what you feel is best at this time, even if at moments you feel sad about it. You can visit him and take time with him and still bring joy to his life. Sending you enormous hugs today.
Melanie
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Julia, We just had to have both of my DH's parents moved from AL to Memory Support. They both have Alzheimer's and went to AL in January. They did well for many months, but he has taken a very rapid decline, and they agreed they would be better together. Their disease presents very differently. When we spoke to her last weekend, she said they were doing fine at the "hotel." They are in FL, but once I am done with Rads, we need to get back down there. I am so glad we got them moved before my C diagnosis.
hhuey, I see a physical med dr Wed. I am gaining more range in the right arm, but it is nowhere near where it should be. My mapping for rads is Jan 2nd, so I am hoping I can gain a lot more flexibility without such pain when I overextend it by then. Did your BS recommend seeing a specialist? My guy is a lymphedema specialist. All the best!!
Peachy, I hope today is a good day for you and you will find out you do not need the Herceptin. I thought it was a chemo, also. Please let us know when you hear. I will check out that link and see what's going on.
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Julia: My thoughts are with you. It is difficult to see our parents decline. Spend as much time as you can and enjoy those precious moments with them. When I was doing pet therapy I visited a lot of Alzheimer patients every week. They never remembered who I was but they always knew who the dogs were.
hhuey: I started to have cording during chemo on my left side where I had the lymph node surgery . With some exercise that I got from physio it has since gone away. Cording does eventually go away but lymphedema unfortunately doesn't. The techs for rads are pretty good. They've seen it all. Do as much as you can with the exercise. Even a little bit helps. My RO said it takes up to six months after surgery and radiation for the muscles in your chest to come back.
Ladies, it's coming close to Christmas. Can't believe it's here. Seems like yesterday it was June and we were starting chemo.
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Kim- my bs has not yet reccomended anyone but I go see y radiation doctor on Friday so we will see. I am keeping on my exercises and although I can feel the cording in my pit I am able to hyper extend my arm now with minimal pain and can raise my arms pretty high up above my had. Sometimes I have to assist my elbow to straighten it out all the way but I can do it. I also have this weird pulling sensation in my lat muscle in my back. You will be able to straighten it out in no time ..jjust keep trying and holding the stretches.
I can't wait until Christmas..luckily we had put funds aside last year with tax returns so we did not have to stress. I got some things I would not normally purchase because of price but I figure you only live once and why not. My kids will only be this little once.
Happy Holidays to you all and may this next year be 100 times better then last. I am thankful to have you ladies here to let me know I'm not on this journey alone and that we are some strong mamajamas. .
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hhuey, I am so glad you are embracing Christmas! I have had such joy in getting gifts this year. So many were so kind to me through all this. I definitely feel super appreciative to be here and on my way to a healthier year. I hope you relish the moments with your family. Glad you are spoiling the kids!!
I, too, can assist the arm up with help from my left hand. It's truly getting a little better each day, but there are definitely tugs, pulls and odd sensations. Eager to see the Lymphedema specialist today. My DH is going with me. I am going to ask about a sleeve, since I will start flying again for pleasure as early as April but maybe March.
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so simulation went well..was able to get my arms up pretty good..nothing like feeling like a science experiment though..flat scarred chest hanging out in a freezing cold ass room with doctors referring to your body parts in medical terms. .ugh so not looking forward to driving an hour away Monday through Friday for 30 days..also have a colonoscopy and endoscopy scheduled before then..after I have to get my gall bladder out..I'm feeling a bit like a punching bag these days..on a positive note I am happy to be able to be with family during the holidays..I'll have to have my hubby mix me up a festive beverage to celebrate. .wishing you all the best
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I forgot to ask..any of you ladies that had a mastectomy it no reconstruction have pain in your lat area on your back? My muscles hurt so bad back there and I don't know of its nerve related because they took some nodes out too over there or something else..my doctor seems to think it's just the nerves coming back alive but I figured I'd ask you ladies
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Merry Christmas to all sisters. May 2018 be filled w good health and prosperity!!!
Radiation is just annoying. Let the heat out of your body as much as possible.
Hhuey, no recon w nodes removal here. I have the exact pain you described. I cannot wait for my next ck up.
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Happy New Year everyone, Things have settled down for me after a couple of difficult weeks with my Dad moving to memory care. We had a nice Christmas with my son and wife and one of my brothers here to help and brought my parents over to my house a lot to ease the transition. After they left my mom and I have begun the routine of visiting him every afternoon. Some days I drop her off and run errands and return to get her. Other days we both stay. Once a week she is playing bridge and I go by myself. Once a week or so we will try to have them over for dinner instead of an afternoon visit.
He was angry at first and had difficulty understanding why he had to be there. After much repetition he is accepting of the situation. The biggest blessing is that his facility is 5 minutes away from my house and hers is another 5 minutes past that.
So now to try to get back to putting my own health first. I want to lose another 30 pounds this year. I had lost 60 before I was diagnosed but took a break from dieting for the last 7 months during all this cancer stuff and just tried to maintain. It is hard to go back on my variation of Atkins (Neris and India's Idiot Proof Diet) but I know I can do it. Wish me luck.
I have been thinking of all of you and hope the new year is going well for you so far.
Julia
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Have any of you watched Lisa Smith's 7 myths? Here is the one about weight. https://www.lisaschwartzmd.com/p/myth-6-extra-weight-is-ok
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And this one is good for some new year's resolutions https://www.lisaschwartzmd.com/p/myth-7-lifestyle-changes
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Happy New Year June chemo friends.
Looks like I'll be doing some more chemo. The FISH test performed on one of the tumors removed at surgery resulted in HER2+ so I now need additional therapy. I will start with appointments next week to review with MO, get an echo, arrange for a port (since I do not want them using my left side for infusions and a year of sticks seems like a lot to put my right arm through) and will begin my infusions.
I will be on a 3 week cycle. The first 4 will be chemo and Herceptin/Perjeta and after that, the following 8 will be just the Herceptin (and I believe Perjeta) for a total of 12. A year. Ugh.
I had finally begun to feel relaxed about this year. I went back to work, found I would not get radiation and was looking forward to finishing up recon and getting back to normal this Spring. I am hopeful I may be able to have the exchange done after chemo and while only on Herceptin but need to double check that it is possible. I've read that women have had it done as long as numbers and heart are doing well.
I know it is better to know and get the proper treatment but it really was a kick in the gut.
Julia, it is nice that you are in close proximity to your parents. I'm sure they are more at ease with your caring presence. Do take care of your health.
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Peachy, I'm so sorry you received disappointing news but you will soon get appropriate therapy to treat this latest development. Yes, you will want a port for infusions, blood draws, etc. It makes treatment much more bearable. Please know that you are in my prayers.
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Thanks HapB. Since I tolerated AC+T and so far the Tamoxifen relatively well, I hope the same is true for this round. I think what was most upsetting is that I had my guard up the whole time waiting for the FISH results and just recently was convinced the test would come back negative and not to obsess too much over it. Ha. My gut knew better. Last time that guard comes down.
Work has been very accommodating. I worked while on chemo last time. Scheduled infusions on Thurs and worked from home Fri and Mon. That was every 2 weeks. I'll have an extra week in between now so should be fine. I have the support of management which is certainly a stress relief. I did go out on short term disability after my mastectomy and was out from Nov 20 - Dec 31. Just went back to work Jan 2. Since I went back without my wig and am sporting a crew cut, no keeping secrets there!
I have to research the port placement. I'm not sure what that entails as far as anesthesia and whether or not I need someone with me for that.
I'll put my big girl pants on and power through this. I gain strength through all the folks here that get up and get it done. It's what we do!
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PeachyJeanne -understand totally, my biopsy was negative for HER, but they ran FISH on tumor sample which came back HER+. Plan was for lumpectomy and brachytherapy, caught me totally unaware when they said chemo now in the plan. I did weekly Taxol/Herceptin for 12 weeks, finished the end of August. Now Herceptin every 3 weeks til May. Been very blessed with only minor and manageable SE. Had port put in May 31, only minor discomfort few days. Has worked great every since, I forget it's there most of time. Mild sedation used, need driver. Also started Anastrozole in September. Have echo done every 3 months, all good so far. Stay positive, you will get through this!
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Peachy, that had to be so hard to hear. You will probably continue to tolerate your treatments well but it is a bummer that you have to do another year. Good that there will be an extra week in between treatments. You will be in my thoughts for sure. Good that your work is supportive. Some folks aren't so lucky that way. Sending a virtual hug.
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Peachy, Sorry about your bad news. I am still on Herceptin and was permitted by both my oncologist and reconstructive surgeon to have the tissue expander removed and the implant placed while having Herceptin alone. My oncologist would not allow it to be done until 4 weeks after my last chemo treatment (TC) but, said it was okay to do while I was still on Herceptin.
I am doing excellent on the Herceptin but, never had the Perjeta. My port placement went well and I never had any issues with it, in fact, they used it during the finish of the reconstruction surgery as well....so glad they didn't have to poke me multiple times!
I wish you well. Hang in there!
Melanie
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Peachy, I am disappointed to hear your news. You have been and will continue to be a trooper through this. Please know we are here for you, still, and you WILL get through this, too. I hate to sound ignorant, but I don't know what FISH is. I don't think it was ever mentioned to me to be tested. I guess I will research that.
Julia, I love that you are so close to your father's facility and your mom's. Sounds like you are an amazing daughter doing all you can. Both of my in-laws are now in memory support, and because she thinks she's fine and he needs a lot more care, they have had to separate them. It makes me super sad to think about, but she was undoing what the aides had done to prepare him overnight (she would remove his Depends saying he didn't need it when he did...will just leave it at that). She, the docile one of the two, would get upset at him - not understanding that he is unwell. When you talk to her, because she is so physically healthy, she says they are fine. That's truly what she believes. She thinks she is at a hotel, and she says she has no privacy. They are in FL, and we are here in IL. We have had to hire private social workers/aides to assist when we couldn't. Of course, I haven't been able to assist since last year prior to my diagnosis. Hoping that will ease up after radiation begins on Monday.
I thought y'all might find this interesting to share with this group. I was looking at my May pathology report - from the LX surgery. Remember, I knew essentially nothing about BC then. So, I knew they had mentioned DCIS, but it also stated I had LCIS, too. My BS nor my Onc mentioned that fact to me at any point. So, I messaged my Onc yesterday to see if I should be concerned about that, or was it their expectation that was the precursor to this cancer, and thus my protocol that followed. I literally gasped when I saw that, because I know ILC is a very different cancer than my IDC, though NONE of this is good. So, I decided I would wait for a response from her and try and just live each day at a time. I have better RoM from my last surgery--still not 100%, and my energy level is good for now. Here comes Rads to possibly change that...ha Interestingly, my port scar is healing very slowly, but I sent a picture to my BS and she said to put Neosporin and a bandaid on and it should in time be fine. I did not put anything on any of my scars, because I felt paranoid. So, I can tell it is improving since I did that.
I think of y'all often. I have been rather busy with my travel business. I will check back more often. Peachy, keep us updated, please.
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KIm, so nice to hear from you. My parents were very wise 12 years ago at age 80 and 83 to move to be near us. It would be so hard to be far away. My dad acts like he is at a hotel too, asking loudly for more coffee. Fortunately we have substituted alcohol wine for the real thing and he can't tell the difference so that helps. He is always worried about paying for things when it all goes on the bill. His mind is good enough that when you explain things to him he can understand everything, but then he forgets. He is understanding mostly that the memory care is his home now and is just glad that mother/and or I come to see him everyday. It is more work for us and it is too bad he got kicked out of the other place because we had a pretty good plan in place there, but he did. So we just do the best we can.
Glad your port scar is healing better now. My doc said mine should heal to a fine white line. Keep us posted on what you learn about your diagnosis.
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Peachy- Im so sorry to hear your news..I had Taxol with Perjeta and Herceptin..not sure how many time I had Perjeta because I did not keep count but I still have Herceptin every 3 weeks..I have very mild side effects like just worn down feeling for a day or so ..with Perjeta and Taxol I developed some bowel issues which I took immodium for. Now I take Prilosec every day instead to coat my tummy and that helps a lot. I know it sucks to get such crappy news but Im sure you will kick butt with this too.
I have my dry run for radiation today and start tomorrow for a total of 6 weeks ugh...I have been prepping my skin and plan to dab with green tea after treatment along with aloe and aquaphor so I'm hoping to avoid any major skin issues. I have 3 cords under my right arm where my lymph nodes were taken so Ill be talking to my doctor Friday to see if they can recommend a therapist for that.. after radiation I need to have my gall bladder removed because they found a polyp in there (had an ultrasound because of discomfort I was having) I had prepped for a colonoscopy and endoscopy for prior bowel issues and a lumpy feeling in my throat and after being up all night on the toilet all they did was the endoscopy because during the procedure they dialated some webbing and my esophagus tore a little so they stopped, woke me up, and took xrays to make sure it was not a perforation..needless to say I am holding off on the colonoscopy for some time because that prep is horrid.
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HapB, Thanks for the advice. I just slathered myself with Aquaphor this morning all over. It felt so good, why limit it to the breast area only. I do see your point, though.
hhuey, Since I turned 50 in August, I am do for a colonoscopy, but I've had them in the past. I agree the prep is wretched! I had one about 8 years ago, so I am in no hurry to rush to another. I will do my best to get it in before the year is out. Are your cords prominent? I was noticing what appeared to be a tight, then one under my armpit this morning. I haven't been able to stretch it so high to see. I just keep doing my exercises. I have yet to get my sleeve and guantlet. The holidays were just too busy.
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Julia, It does seem things can change fast with them once they get into care. My in-laws were in AL for a year, not without a few issues, so this is truly the best place for them. Because they have lived in FL for 15 years prior and wanted to stay (according to pre-dementia wishes), we tried to honor that. It is not easy, but my DH's sister is going down next week. I know we will need to get down there as soon as we can. He has declined so much that if something happens to him, we will bring her to a facility here most likely. I think it is precious y'all are visiting daily. I know that is not easy, but I am sure that is comforting to him.
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