Starting Chemo in August 2020

Welcome Mary,

I loudly echo brtittonkb’s sentiments. Sorry that you are joining us under these circumstances. Please consider this forum/group as you safe space to feel how you feel and share as you like. We have all been in your shoes when we got the dreaded DX. It is A LOT to absorb. You are not alone in your journey! Sending a HUGE VIRTUAL HUG your way!

Hope you feel better Mel. I had to miss my 2nd dose of chemo 2 weeks ago due to Oral Shingles my mouth was a mess! I feel your pain! Feel better

Hi Maria and welcome! Yes I am on Erubilin. What type of breast cancer do you have ER+ HER- or TNBC or Triple + ???

I have ER+ HER2- and I originally had Stage0 in 2014- lumpectomy and radiation only. recurrence in 2019 thought Stage 2 had double mastectomy no reconstruction...then 8 weeks later I mentioned about a pain I had had for the past year (prior to the Stage2 diagnosis) and so they scanned...Mets in Sacrum, Hip and liver...and now...C7:(.

I have been on Ibrance/Letrozole/Faslodex/Lupron - that was my 1st line of treatment worked for only 3 months then failed. I then had Cryoblation to 2 liver tumors (they are still dead) but I have 3 more now. Then I had ovaries out, then 2nd line of treatment Xeloda (oral chemo) no luck failed...then Doxil chemo no luck failed and now line 4 ...Erubilin. If this fails (I should be scanning in Oct) We will go to Abraxane and Hopefully Tecentriq with it since I do have 10% of a triple negative gene PDl-1.

What treatments have you had and where are your mets?

PS: So far Eruibilin has been good to me...first dose though I came down with oral shingles..bad...and ran some fevers for about a day. Then we had to skip the 2nd dose the next week because my mouth was so bad. Then I just had it last Thursday and Today. . I do not do any premeds for nausea just a reduced dose of Steroid (which I also want to drop) I did get some diahreah after 2nd treatment now lose stools. but nothing bad. My neutrophils were a little low today but still in range after the granix shots I did after last treatment so today I got the nuelasta shot to hold me over.

Nicole I am ER/PR+ and HER- and have done AC/T as above. Then with advanced cancer 3 years ago I was Ibrance and Faslodex which worked for a year. Since then I have done capecitabine and gemcitabine. In 2013 I had radiation, 28 sessions +3 blasts to the area where are my original tumour was. In 2017 when I was diagnosed with metastatic cancer, the tumour was entangled in the neurovascular bundle of the brachial plexus. Due to the location surgery was not possible but there was a lot of pain extending from my scapula to my shoulder and down my arm to my hand. The decision was made to radiate the area over eight sessions. The chemotherapies above started then and ended in November 2019. Over the years from diagnosis in August 2017 the neuropathic pain that started the investigation worsened and despite drug therapies and nerve blocks the pain became intolerable. The decision was made to insert an intrathecal pump with a catheter that was threaded up my spine to the area of nerves were the pain radiated from. There was an initial surgery with an external pump to make sure the medications worked. That was followed by embedding a pump the size of a hockey puck in my abdomen and the catheter as above was threaded up to C6/7. A few weeks later I spent a few days in ER with a cerebral spinal leak no doubt caused by the surgery. That was possibly the worst experience of my life as it took five days to get a space for the doctor to do a blood patch to seal the leak. All through those many weeks I continued chemo, going from hospice to the cancer agency on the same campus for the treatments. Once discharged I continued chemotherapy other than the time spent in ER. By the end of November my bloodwork was continuing to tank despite a blood transfusion. The day I quit chemo my haemoglobin was below 80 but just high enough for treatment. It looked like I would need another transfusion and I said no, I am done with chemotherapy forever. I felt broken and ready to give up everything. At the end of April I had another severe pain episode and ended up back in hospice where it was decided to change the drug fentanyl and bipuvicaine to Sufentanil and bipuvicaine. I am now on the strongest opioid there is and have added methadone and ketamine orally.

Now the situation has changed with the new progression and with the pain mostly in control I do feel that the only decision is to start Eribulin. To all of you starting chemotherapy, many are starting for the first time and In a way I feel that I may be in the wrong place yet I have not found any other sites for the chemotherapy I will be starting. I look forward to any advice or threads that may be more relevant.

Thanks again brittonkb and the rest of you for hearing my story.

Marian

Hi! My name is Michelle. I was diagnosed with breast cancer in June 2010 at 36. I hope you don't mind me popping in, but I like to check in with the August chemo groups. I was in the August 2010 group and I relied and leaned on my group. I also know there were many times that the people in that forum were the only ones that I felt truly understood what I was going through. I know it is scary, but I also believe you are all stronger than you think! Trying to stay positive when you are going through this can be hard...there is a wonderful thread called Success Stories. I know I read pages of comments on my down down days. Hang in there...I know it seems like it will take forever to get beyond this, but there is so much waiting for you all. Sending big virtual hugs!

Welcome Marian. I pray for healing and comfort for you. Its been a hard road for you. I know this treatment will be what you need to turn it all around. I pray for no more pain. I can relate to a lot of your story.

Thanks Michelle for stopping in and spreading hope and cheer.

Hi Everyone,


I will be joining you all. A little bit about myself. I was diagnosed on September 11, 2018 with tnbc stage 2A grade 3. I did chemo, surgery, chemo, and rads. Fast forward to August 14, 2020 when I was diagnosed with metastatic breast cancer. It is in my mediastinal and hilar lymph nodes and a couple of nodules in the lungs.

I started Abraxane and Tecentriq yesterday. I am hoping for little to no se.

marian: (*&*^%_)(*& !!!! I have been hopscotching all over the threads but came on this. I do not have the words to express how I felt reading your past posts. I am so sorry you are having to got through this. It has to be torture and no one should have to endure it. I will check in again to see how you are doing with the new chemo. Having to do chemo again just sucks. As I wish for all of us, I hope this treatment puts you back on track.

Cyber hugs from a fellow British Columbian

Notgivingup. Coram...ok not to far...I grew up in Oakdale (south shore by Sayville) and then lived for 15 years in East Islip.

Abraxane and Tecentriq may be my next treatment IF this one fails. I have not been able to have a treatment work yet since my Stage 4 Diagnosis last year....this is my 4th line.

Edited for correction

Notgivingup ... My bad I didn't see that in your signature before (chemo brain)... I could have sworn your signature just said Stage 2b.

Sorry. I hope you do so well on it!

Hi ladies. I just wanted to check in. I received my 2 nd Abraxane Wednesday and felt ok yesterday but cant keep my eyes open today. I dont know if anybody here was on Xeloda at one time and suffered from hand/ foot syndrome side effect. It burnt my hands and feet up so bad and we kept cutting the dose because it was just open sores and couldnt walk or use my hands. Thats why I eventually failed it. Anyway my point fir sharing that is I noticed last night that 2 areas on my heal were hurting again. I was going to ask if anyone had that issue. I dont know if its just because the chemo lowered my immunity or if it was because I tried to ice them during infusion or if its just part of neuropathy I guess it was just some areas that werent completely healed. My first abraxane brought my wbc down from 4.6 to 1.2. I started more probiotics and fluconazole because the oral thrush was not getting better. I am still choking and cant eat and esophagus pain so bad that I am taking pain pills. Thats from the radiation to my cervical and thoracic vertebrae. But my radiation doctor is sending me for a swallowing study and gave me all the meds for thrush which I think is getting better today just not the swallowing. I think I have lost like 20lbs in the past month or so Back to chemo, I feel like I would have diarrhea if it wasnt for the pain pills. Basically minus the radiation side effects I feel like the Abraxane is very tolerable. Next week they will add tecentriq in the mix. I just wanted to share my symptoms and ask everybody how their symptoms are. Healing hugs and prayers for everyone. Thanks for being here and sharing.

Nicole did you notice my private message and friend request?

Notgivingup, Welcome and I am a newbie here too. Most of my cancer history is above but I noted that you have mets very similar to my recent progression. My CT report was not well written but I have a “new right parahilar/infrahilar soft tissue mass 2.3 by 1.7 in “hila/mediastinum." Does that make any sense to you given your diagnosis? I got my news last week.

Eelderberry thanks for your post. I talked to Ann last week and I asked about you. How are you?

Melanie, even though we can't remember pain exactly and feel each other's pain, I have had NG tubes and the agonizing pain from them makes me know the agony. Any idea of how long the radiation burns will last?

The weekend is here and I wish you all the best.

Maria

Marian: I am feeling pretty good. I should have had a PET scan this month but it is now October 17th. Covid protocols have made a mess of things. Dr Sasha didn't seem too concerned about the delay. He always makes me feel optimistic. I hope this new line of chemo kicks cancer butt and doesn't have too many SE's. Does it cause hair loss? It is small potatoes compared to all the other stuff but it is so disheartening. I will check in more often to see how you are doing.

Blessings to all

Hi, I’m new here. I was diagnosed with breast cancer on my liver last month. I do not and never had breast cancer in my breasts. I have had clear mammograms every year. The oncologist told me that it is not common but does happen. He said my immune system could have fought off the cancer developing in my breasts but some cells made their way to my liver. I had my first Taxol, Herceptin and Perjeta treatment on August 13. I’ve had three treatments and so far my SE have been minimal. After the second treatment my hair started to fall out. Handfuls of hair are coming out now. I’m thinking I might not have any left if this continues for another week! I’m going to get a wig. I think I’d feel more comfortable out in public with hair. Not that there are a lot of places I go anyways with COVID. I’m not looking forward to losing my hair but it’s not the worst SE to deal with! There are positives: I’ll save money not having my hair cut and colore, I’ll save time not styling my hair and if I get two wigs I can have short hair one day and long hair the next! I’m glad I found this forum. It’ll be nice to connect with people that have breast cancer too.

Denise