ER-, PR-, Her2+ Roll call
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UnrealTarHeel- another tar heeler here! I did the Taxol and Herceptin 12 week protocol this past summer. Now on Herceptin every 3 weeks.
I worked full time during treatment. I choose Thursdays as my chemo day (my place did not do Fridays) and found that I could work Fridays (had the steroid energy), Saturday mornings were good but crashed that evening. Sundays were the worst for me. Very tired due to the steroid lack of sleep Thursday night-Saturday. I eventually added CBD oil and melatonin to my evening an hour before bedtime and that helped.
My hair came out and I wore soft slouchy hats (cotton) that I got on Amazon. I wore these to work because the wig I bought hurt my head. I made sure that the shirts I wore to treatments buttoned or zipped up the front so the nurses had access to my port. I always wore scrub pants and a hooded jacket because it was really cold in the center. They have heated blankets though. Bring something books, tablets, snacks to the treatments because you will be there for awhile.
I iced my hands and feet but I was the only one who did it there. No neuropathy. I did have a problem with the benedryl though. I got horrible leg twitches/muscle spasms. I think it was the combo of steroid and benedryl. They slowed the infusion rate on the benedryl and that helped.
I did get the nausea but it was not so bad that I could not eat something. Salads were not doable due to the metallic taste from the chemo. My favorite meals were noodle based like spaghetti. But I am a vegetarian mostly vegan so meat may be ok for you. My husband is a vet and got some essential oil called GI Joe which helped some of the nausea.
I was very tired on Sundays but still managed to work Monday through Wednesday and some on Saturday morning. We really stayed close to home during those 12 weeks. It was rough but not terrible. A lot of people say that this protocol is considered chemo light.
There is probably more that I could say but don't want to overwhelm you. Good luck and I know others can help out with suggestions. Check out the weekly Taxol thread. It was great to go through it with others
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To another dogmom: Chemo was rough. Nausea, yes, but kept in control. Fatigue was a problem, but I allowed myself to sleep. Dogmom responsibilities could have been rough if I had had my dog at that time. Find yourself a dogwalker, and practice rigid social distancing. I had a late chemo once because of immunosuppression. Neuropathy is still a problem a year later, I probably make it worse with all the walking I am doing, but the gym is closed, and my dog is an excellent coach. Herceptin was a cinch.
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Thanks, @DogMomRunner. I remember your helpful replies from over on the newly diagnosed board. I feel like I can see the next year unfold when I read your comments. I appreciate your not wanting to overwhelm me, but our diagnoses are so close and I would be grateful to hear more. I'm not eager to get started, but am so anxious about it that I'm almost ready just to jump in so that I don't have to keep imagining it all. It looks like chemo days will be Tuesdays, which is probably not ideal for working. OTOH, we'll certainly be working from home for the duration, where everything kind of blends into everything else, so maybe it will be ok. I'm receiving treatment at UNC. You?
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Also, would love to know your method of icing. It seems to be totally a DIY project....
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TarHeel - there are a ton of useful tips in the thread below. I iced with frozen peas in zip loc bags - 30 minutes before, all during the infusion & 30 minutes after. I had two sets of bags. The nurses kept the replacements in their freezer and brought them to me half way through.
https://community.breastcancer.org/forum/69/topics...
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UnrealTarHeel- yep, pretty much the same diagnosis. I hate it for all of you going through it now though. My husband came with me for all of the 12 week treatments and I know that they're not allowing visitors now.
You have to be so much more careful about coming into contact with others than I did. My WBC dropped after the first couple of treatments so I had to have the Neupogen shots. They were literally a pain. If you have to have them, take a Claritin that morning and then stay on it a couple of days. It helps with the bone pain.
I am about 30 minutes north of Charlotte. My radiation treatments were in Huntersville but everything else done close to home (Lake Norman). The UNC area is probably the better place to be. More options for healthcare providers at the least.
My icing was done with 4 CryoMax cold packs ordered off Amazon. I had two 6x6 for hands and two 6x12 for my feet. I wore thin gloves and sock and stuck my hands and feet inside the covers that come with the ice packs. It looked weird but seemed to work and they lasted the entirety of the treatment. I cut holes for my forefingers in the covers so I could swipe my kindle or phone.
As far as taste - food or drink. I found that I could not drink out of plastic cups. I drank a lot of ginger ale and water. And coffee. Thankfully coffee was still ok.
It's doable. You just have to be willing to take care of yourself. Put yourself first, which is hard for some of us women. Rest when you need to. My favorite item of clothing became and still is a soft hooded jacket. You will be cold even during the summer.
Let me know if you ever need to talk. You got this!
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Thank you so much for the link, @MinusTwo. I think I've looked at it before but now that this is getting more real, time to study up...
@DogMomRunner: I would like to connect. Will DM you? UNC is currently allowing 1 visitor, but that could certainly change between now and May 12. I just received some of the Cryomax thingies + a set of NatraCure socks, so should have some options to try. I hate that we are on our own for stuff like this, but a least my MO is supportive of trying it.
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Bumping for Debra
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Am I Debra?
I answered your PM UnrealTarHeel.
I work in long term care and it's been very busy lately.
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It sounds like you might be... PM received and I'll message later. I can only imagine what things are like right now in any kind of health care field. Take care!
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Hello Ladies!
This is my second breast cancer diagnosis in 4 years. The first time around it was IDC in the right breast, ER+/PR+/Her2- and this time, it is IDC in the left breast, ER-/PR-/Her2+. So the complete opposite of my first go round. Thankfully, both were/are Stage 1 with no node involvement, which is good.....BUT....this second diagnosis has left me pretty rattled. It's more aggressive for sure and that scares me.
My mother was diagnosed with Stage 1 IDC breast cancer at 42, I was 41 the first time. She passed away from Metastatic Breast Cancer at 56. I have done genetic testing twice, once in 2015 when first diagnosed and then again this year, when diagnosed the second time. Both tests came back negative, no genetic connection. This last one tested over 95 genes. I am pretty shocked by that, to be honest!
I had a lumpectomy the first time and had another this second time. Reason being is because the tumor was very small, less than 8mm and I wanted it out so I could move forward with chemo and Herceptin ASAP. If I had a mastectomy, the recovery would be much longer and I didn't want to wait that long to get started on treatment. Knowing that this diagnosis is more aggressive is what fueled that decision.
Now, I am on treatment 7 of 12 weekly Taxol infusions, (along with Herceptin), and have appointments set up with my surgical oncologist and plastic surgeon for the first week of June, to get the ball rolling on a double mastectomy with immediate reconstruction. I am leaning towards the DIEP flap, but am not sure if that will be an option for me since I have had 5 abdominal surgeries since 2004. If it's not, I'm looking into implants. We shall see.
Anyway, I would love to connect with other ER-/PR-/Her2+ ladies out there!0 -
etnasgrl, welcome to the early club. We are few and far between, almost off the charts. We can't be exclusive, because we need to support those who have a tough road.
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Just wanted to check in. Hormone negative, HER2+. Sadly I’ve gone through a lot of the HER2+ targeted treatment and none of them have worked for me either completely or for an extended period of time. But I’m hanging in there
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Bumping this thread to ask if anyone decided to keep their port after finishing their year of Herceptin. Just in chance.Not on any other treatment and mammogram was good. My MO said his recommendation was to remove it because chance of recurrence was relatively low. I will see my BS next week for my year check up after the lumpectomy.
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I have kept mine for five years. It was put in February 2015. My oncologist has mentioned several (well, more than several) times that I needed to get it out. I was concerned about recurrence. Also, I had read of people having trouble with their ports as in it showed when they wore tank tops or a swimsuit. Also mentioned was that it was uncomfortable and that they couldn’t sleep a certain way. No problems with mine at all. I never even think about mine until it is time to get it flushed every two months. That being said, I think after five years I am about ready to get it out. I going to make an appointment this summer with the surgeon who put it in and see what she recommends.
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I kept mine for close to 5 years. It was a 'power port' and I loved that I could get all blood draws from the port. Also I could use it for contract for CTs and MRIs.
I drew lines on my body before the port was placed so that it wouldn't be under my bra and wouldn't show with most clothes. It was never uncomfortable.
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I had mine removed almost immediately. It did hurt, but the pain continued after it was removed. We later decided that the pain was some tissues stretching with the weight of the implant, and I just realized that I have not been having that pain. Accessing the port was always such a production, I prefer the traditional, low-key way of getting a draw. There were times I practically had to do jumping-jacks for them to get it moving.
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Hi ladies, is Trastuzumab alone effective? or should it be given along with perzutumab? My mom will only have Trastuzumab. She's about to get it along w/ docetaxel on the 22th.
Thank you in advance
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Trastuzumab (Herceptin) was the original infusion for HER2+. I believe there is a generic now. It is usually given with with Taxotere or Taxol for 6 infusions. Then given alone every 3 weeks for the rest of a year. (I think it's 17 doses)
Perzutumab (Perjeta) is a newer drug. In some cases it is given with Herceptin, but not always. Because I had a recurrence, I was able to get Perjeta added, but I only did it for my first 6 group infusions.
Good luck to your Mom.
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Thank you as always for answering me MinusTwo
Is having neo adjuvant chemo really worth it? Do most tumors with this cancer type really shrink after completing the cycles? 0 -
Hi there, fightingmama! I haven't been on in quite some time, but when I saw your post, I wanted to pop in. My tumor went from 3 cm to .5 mm before surgery. I could feel it shrinking! It was super encouraging.
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Hi mjb1018
Thank you so much for taking your time to post something as encouraging and uplifting as this. I see you also only had Trastuzumab. Could you please share the most common and expected side effects of this drug? And how it made you feel the whole course. I want to be as educated as I can be to help my mom.Thank you
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fightingmama...I had Taxol + Herceptin 🙂 That phase of treatment was much easier than than the AC. The Taxol took my eyebrows, eyelashes and nasal hair. You sure don't realize their purpose until they're gone! I was fatigued, developed some neuropathy in my fingers and toes, and a black toenail. I had to delay a few treatments due to low blood counts. Since I started radiation while I was still getting Taxol, my energy really tanked during that time. That's about it. The Herceptin alone was a breeze! No daily side effects that I can recall. I didn't quite make it through the full course of Herceptin, as my heart was showing signs of reduced function. My Oncologist felt I had had enough, anyway. I think I skipped out on the last 2. All is well now! I'm just about 18 months post all treatments. Wishing you and your momma well.
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fightingmama.. My wife's tumor was 5.9 and it went away completely as it was not detected in lab after neo adjuvant chemo (TCHP). And she is currently going through Herceptin and Perjeta cycle after the operation. 3 more to go.
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Robmon19: Hi! What stage was your wife when she got diagnosed? Hoping and praying that my mom will also get a wonderful response from the chemo as your wife did. Thank you
mjb1018: It sure was sooo tough. I'm glad and proud that you made it! Thank you for your nice words for me and my mom
p.s, I'm wondering if they could still proceed to surgery even if the tumor didn't shrink that much after chemo. Anyone?
Thank you
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Robmon19: Hi! What stage was your wife when she got diagnosed? Hoping and praying that my mom will also get a wonderful response from the chemo as your wife did.
mjb1018: It sure was sooo tough. I'm glad and proud that you made it! Thank you for your nice words for me and my mom
p.s, I'm wondering if they could still proceed to surgery even if the tumor didn't shrink that much after chemo. Anyone?
Thank you
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Yes - my tumor shrank some during TCHP (can't remember the numbers) but I didn' t have pcR - (completely gone). The surgeon still proceeded. Because it was a local recurrence, after I healed from surgery they scheduled 4 rounds of a different treatment - Adriamycin & cytoxan. I only made it through 3 rounds. You can't do Adriamycin with Hercetin because both can effect the heart. Then I moved back to Herceptin only for the rest of a year, along with 5 weeks of radiation.
Don't remember if you said how old your Mother is, but I was 69 when I started the chemo, etc. detailed above. It wasn't a walk in the park, but I did it and it's almost 6 years in the past.
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MinusTwo - Thank you for all your inputs. What a brave and strong soul you are! My mom is 59 years old and I believe she could also kick this beast soon just like everyone of you.
Also, i'm currently researching about what to avoid and take for her2+ patients and i stumbled upon this article. Do you perhaps know the accuracy of this? I'm just worried because my mom is taking a nutritional supplement for 3 weeks now (Vitamin B-Complex + Iron + Buclizine Hydrochloride) and her first infusion would be tomorrow
While i'm at it already, could I also ask what supplements/vitamins to avoid in general during the whole treatment?Thank you so much!
'Many women undergoing treatment for breast cancer develop abnormally low iron levels. Since blood counts usually are monitored periodically, these women will be identified and treated. However, based on the available evidence, women on Herceptin who are not iron-deficient should avoid iron supplements (including those in multivitamins), as well as sources of heme iron (from non-plant foods) such as red meat, shellfish, or any type of liver. The body absorbs heme iron more effectively than nonheme iron from plant sources such as spinach and dry beans. Tumeric contains curcumin, which has been shown to be an iron chelator (a compound that removes iron from the body) as well as acting as a copper chelator.'
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fightingmama - my oncologist had me stop several of the supplements I was taking. And had me start B-6 and B-12 to help with the neuropathy. Be sure and check w/her doc, since too much can be worse than too little.
In fact you should be sure her doc & her infusion nurses have a list of any things she is taking before each infusion.
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Just posting to add my annual "I am here, alive and kicking.'
My annual visit to the oncologist was postponed from the end of March until today because of Covid 19 precautions at the practice.
I was diagnosed on November 2006, (IDC, Stage 1, ER/PR negative, HER2+, no nodes), finished hard chemo (A/C) at the end of February 2007 and herceptin in February 2008.
Mary Jo
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