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Starting Chemo in August 2020

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  • smittyclay
    smittyclay Member Posts: 4
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    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!

  • melmcbee
    melmcbee Member Posts: 371
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    Welcome Mary and Me! I started my abraxane and tecentriq yesterday. Unfortunately I am dying of sore throat and esophagitis and thrush due to the 5 days of rads that I had 2 weeks ago to my spine in my neck and chest area. Hopefully I can get it under control while doing chemo. Healing hugs to all.

  • nicolerod
    nicolerod Member Posts: 2,877
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    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

  • marianelizabeth
    marianelizabeth Member Posts: 1,156
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    Hello to all of you and thanks brittonkb for starting this thread. I had a look yesterday briefly for a thread for Eribulin but either I did not spend enough time or the search was wrong. It has been a long time since I joined a new thread and things look a little different.

    brittonkb, I was thinking earlier in the week about an old friend Kathleen Britton. I know it is a long shot but sometimes this is a small world. NicoleRod, I too am on Eribulin~~ at least I will be starting next Wednesday. I am curious to know how are you ended up on this chemo.

    Does anyone know how to go back a page and not lose the content of a post in progress? I need to go back and forth to start to remember names and diagnoses for each of you. For today I will just give you a short version of my cancer life. I was diagnosed in July 2012 with Stage IIIA after a lumpectomy and sentinel node biopsy. My surgeon took 8 nodes as she did not like the look of things. 6/8 were positive and some were extra capsular as I see someone else here had happen. I did A/C and T followed by a mastectomy and axillary dissection. Even after chemo one more node was positive. Three years ago I was diagnosed with MBC though regional. More later but results from a CT scan this week showed progressive metastatic disease, the reason for starting Eribulin. A PET/CT has been ordered and should be done in the next 2 to 3 weeks.

    I will look forward to sharing our breast cancer lives with all of you.

    Marian

  • nicolerod
    nicolerod Member Posts: 2,877
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    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.

  • Lostpup2424
    Lostpup2424 Member Posts: 4
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    I start chemo in about two weeks. I'll be on Herceptin and Taxol. Someone mentioned steroids and I have been prescribed them as well. I am prescribed something like 15 pills and was wondering about the side effects of so much. Does anyone know? The last time I had steroids I was very agitated.

    I am very nervous about starting chemo. I guess that is to be expected. Mainly nervous about the first infusion and potential side effects.

    Thanks to all of you that post. It is a big help.

  • marianelizabeth
    marianelizabeth Member Posts: 1,156
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    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

  • nicolerod
    nicolerod Member Posts: 2,877
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    Wow Marian...thats a lot to take in. I am so sorry for all you are going through. I am amazed at your resilience. I pray that Eruibilin works for you. I just read something bad about it on FB someone said by month 3 on it they got severe neuropathy (even with icing at infusion)..and then they lost all sense of balance. So that just made me depressed...here I was thinking this isn't bad at all....(1 round in) ..I guess it builds up....I do infrared sauna (just started) and I plan to a minimum of 4 times a week to detox and I do drink a TON of water 68 - 80 oz a day (which is a lot because I am 94lbs) so I am hoping that will help filter things out and move along...everyones body is different ya know? I meet some women that are on Taxol for 2 years and say they have hardly any side effects? So go figure.

    Either way you are here...I am here we are both on Eruibilin...so lets keep up the contact! :)

  • mommichelle
    mommichelle Member Posts: 92
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    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!

  • brittonkb
    brittonkb Member Posts: 81
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    Welcome Marian! I’m so sorry for all you’ve been through already and hope this next treatment works well for you and with minimal side effects. It sounds like you and Nicole will be able to share your experiences with this treatment which will hopefully be of benefit to both of you. I don’t know if your friend Kathleen but sure wish I did. I’ve been to Victoria once and would love an excuse to go back!

    Thanks for popping in Michelle! I have one friend who is stage iv with Mets to bones/liver and she is such a source of knowledge and strength for me. Otherwise, there has been no history of any cancer in my family and not really with any friends either so finding others on here who have been through it or still are is so helpful. I will definitely check out the Success Stories thread. Thanks for sharing!

  • melmcbee
    melmcbee Member Posts: 371
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    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.



  • marianelizabeth
    marianelizabeth Member Posts: 1,156
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    Thanks Melmcbee, Looks we started out about the same time same hormones and treated with same chemotherapy, radiation and then reconstruction. Mine was ductal, yours lobular is that right? I did 4 years of Anastrozole after that stuff we both did and all seemed OK until 2017. And here we are now, me starting Eribulin and you are on Abraxane and tencentriq? With awful S/E it sounds. But they are from the rads to throat and neck~~it sounds brutal and must be hard to swallow just about anything? I do have good drugs for my neuropathic pain but have not done any chemo since Nov. 2019. Ah well, I guess my 8 month break is coming to an end and I too expect some S/E. We will see~~4 more days to the start

    I hope all your weekends are going well.

    Marian

  • Notgivingup
    Notgivingup Member Posts: 143
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    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.
  • nicolerod
    nicolerod Member Posts: 2,877
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    Welcome Notgivingup...what part of NY are ya from? I grew up and lived my whole life in Long Island....

    Good luck on the Abraxane and Tecentriq keep us posted on any side effects.


  • elderberry
    elderberry Member Posts: 1,065
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    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
    Notgivingup Member Posts: 143
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    NicoleRod,

    Thank you for that welcome. I am in Suffolk county (Coram). Small world. I am very tired and not very hungry today. I am eating small meals throughout the day. That seems to be the main se for me today.

  • nicolerod
    nicolerod Member Posts: 2,877
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    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
    Notgivingup Member Posts: 143
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    NicoleRod,

    I am stage iv as of August 14th. That is why I am getting Tecentriq and Abraxane.
  • nicolerod
    nicolerod Member Posts: 2,877
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    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!

  • Notgivingup
    Notgivingup Member Posts: 143
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    NicoleRod....It's ok. I understand the chemo brain.
  • melmcbee
    melmcbee Member Posts: 371
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    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.


  • nicolerod
    nicolerod Member Posts: 2,877
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    Mel....oh my goodness I feel so bad for you!!!! HUGS

    I just had a bout with oral shingles so I feel your pain. I have a question....you had radiation to the Cervical??? Which one? I just found out last month I have a new mets at C7 I was considering radiation.....I asked a lot of people on FB about it to that area I didn't hear any had swallowing problems...and I would imagine that it would be from the Cervical and not your thoracic bc that is so much lower? When did you have that radiation done on the cervical and how long after did you have problems?

  • marianelizabeth
    marianelizabeth Member Posts: 1,156
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    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

  • nicolerod
    nicolerod Member Posts: 2,877
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    Maria...no I don't see a friend request? or PM?

    Just saw it and replied :)

  • elderberry
    elderberry Member Posts: 1,065
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    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


  • marianelizabeth
    marianelizabeth Member Posts: 1,156
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    Elderberry, it can cause hair loss and thinning seems likely. Since I had no hair first go 8 years ago and this time I have had hair only recently. I t is starting to wave at the back as usual though not curly yet. The colour is great, more blond in the grey than before. Without hair I was OK and only wore my wig twice. This time I feel bad, it is one loss too many. I am glad you are feeling pretty good. As for the PET, it is probably people like me who is slow down you getting yours,

  • d37
    d37 Member Posts: 73
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    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

  • elderberry
    elderberry Member Posts: 1,065
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    D37; I knew I was going to go bald so I went and got a really really short cut, suitable for the Marines. I did that weeks before my first chemo to get used to the idea. I knew that having handfuls come out in the shower or left on my pillow would be horrifying. After the first infusion I went back and buzzed it back even further, it was probably an 1/8 of an inch. It was last summer so I wore cotton scarves wrapped around my head and big earrings so it was a sort of Boho look. I did buy a wig but it was too hot in the heat and itchy. Having no eyebrows was bad. It made my face look so blank and drawing them on was a challenge. I was afraid of looking like Groucho Marx. The day after Taxol I got really rosy red cheeks and Perjeta gave me a rash on my forehead. I was lucky not to have any nausea but I had, as the saying goes, the BD. Liquid Imodium was my friend. Oh yeah -- and losing my "short and curlies' was weird and creepy for me. I was never into waxing. :-)

    Denise, this is a good place to come to express your fears, anger, whatever is going through your head. No one will judge you and we will all understand you.

    Marian: I think a second hair loss for me would be awful. First time around I accepted it as a given and dealt with it. I like what is coming back. It is a nice shade of grey with a couple of chunks that are quite white. I don't know yet whether I have chemo curls or the hair I had when I was a little kid before I grew it long and kept it long. It is baby fine so the weight of length made it just wavy midway down. Right now my hair looks like an early Bob Dylan.

    As Dr Bonnie Henry says:

    Be kind

    Be calm

    Be safe









  • moderators
    moderators Posts: 8,185
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    Dear D37,

    Welcome to the BCO community. We are sorry for your diagnosis but glad that you reached out to share your story with our members. We hope that you will find support and information here that will help you along the way. Check out this link to information about Wigs here on the boards and on our main site. Let us know if we can be of help as you navigate your way around.

    The Mods

  • nicolerod
    nicolerod Member Posts: 2,877
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    D37 welcome! Sounds like you have HER2+ breast cancer since you are on Herceptin. I lost my hair for the first time ever and decided to have my husband shave it off 2 weeks ago. I got a wig I like it but its way more cooler and easy to just wear a little hat or bandana right now...so I do both.