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Scared..Dealing with a recurrence.

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Prestonsmother View Drop Down
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    Posted: Feb 06 2018 at 12:12pm
Hello everyone. My name is Arena. This is my first time posting. I have been lurking around for about 1 year and a half reading your stories and finally have the courage to tell mine. In July 2016, I was diagnosed with DCIS after feeling a large lump in breast. I felt the lump shortly after I stopped breastfeeding my son. The lump was large enough where the surgeon recommended mastectomy. Long story short, mastectomy done in September 2016. Pathology comes back show tumor 80 percent DCIS with approximately 20 percent triple negative invasive carcinoma with 2 lymph nodes positive as well... Next was a pet scan. Luckily no evidence of disease left. Then had to go in for another surgery because my tissue expander had to be removed because the mastectomy incision was not healing properly. What nightmare..Chemo began (A C T ) started in November. Not too bad.. taxol was terrible tho. Then radiation began in May. Finished treatment on June 2017.... In December 2017, I was having a follow up ct scan for a tiny lung nodule that was seen on pet scan. Lung module is still unremarkable, BUT then an axillary lymph node lit up. And to make matters worse, they find a clot in the right atria of my heart which they believe was caused by the port. I was immediately started on blood thinners. Lymph node was positive for cancer again. I had another pet scan which showed only the one lymph node involved. I just had the axillary node dissection on 1/26/18. Surgeon believes we got everything. Chemo to start in a few weeks. Not sure what chemo is next. I’m terrified of getting another port. Prayerfully, the next chemo can be via peripheral IV infusion. I’m trying to stay positive but am having a really hard time with it this go around... any words of advice? Thank you in advance , Arena
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Falcon Quote  Post ReplyReply Direct Link To This Post Posted: Feb 06 2018 at 7:01pm
Hi Arena,

I will keep you in prayer if you ever want to talk you can pm me and I will send you my phone number.

My oldest daughter Jessica is a TNBC survivor going on 8 years. If you want to talk to her as well just let me know.

Susan
My daughter Jessica
Treated and Healed!!!!!
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Feb 06 2018 at 8:38pm
Arena, I'm so sorry you are dealing with a recurrence.  It's still locally contained so that's good news.  Have they told you what type of chemo this go around?  Will they follow up with radiation too?  If you look at my stats, I had a recurrence to the regional lymph node(s) - the internal mammary nodes about 13 months after finishing chemo the first time.  It was in an area that couldn't be surgically removed so we fought it with chemo (Carboplatin, Gemzar and a clinical trial drug Iniparib) and I got to no evidence of disease after 2 cycles.  Radiation followed to mop up any remaining cells.  

I don't have any words of advice except you can do it!  I sought counseling during the recurrence, which I wish I would have done the first go around.  Our cancer center offers free counseling to cancer patients and their families.  You might see if there is a similar resource around where you live.

Donna
DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15

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Post Options Post Options   Thanks (0) Thanks(0)   Quote Prestonsmother Quote  Post ReplyReply Direct Link To This Post Posted: Feb 06 2018 at 11:06pm
Hi Donna,

Thank you for your response. I meet with my oncologist this Thursday to find out next chemo plan. I was told I can’t do radiation again because I’ve already had it in the area. I will look into talking to someone because I’ve noticed that after I attend my breast cancer support group I feel a lot better just talking to people who know what it feels like. I’m being treated at Johns Hopkins. I’m pretty sure they can refer me to someone.

Thanks again,

Arena
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Prestonsmother Quote  Post ReplyReply Direct Link To This Post Posted: Feb 06 2018 at 11:07pm
Thank you Susan. Thanks means a lot.

Arena
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Prestonsmother Quote  Post ReplyReply Direct Link To This Post Posted: Feb 26 2018 at 5:51pm
Hi Donna,

So I started carboplatin and gemzar last week. So far so good. I feel fine except for nausea that’s been nagging me for a few days. I went to have second treatment of cycle one this morning but found out my ANC and WBC were too low for treatment, 0.81 and 1.5 respectively. My nurse was looking at me like how I am walking around? Lol.. I told her I feel fine except for the nausea. Any who, did you have any of these experience when on cargo/gem?
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Feb 26 2018 at 10:38pm
Arena,

I'm so sorry you are dealing with the nausea.  It was one side effect I never had.  I don't know if it was because of the anti-nausea meds they gave me before chemo or maybe I was just lucky not to suffer that side effect.  My WBC and Neutraphils did go down and was low during treatment, but didn't cause a delay except for the last treatment which they stopped.  After my last treatment, they gave me a neupogen shot to help with the WBC.  The one problem I had were very high liver enzymes.  I don't know if it was the Carbo, Gemzar or Iniparib or the combination of all 3, but they were real high.  The second cycle was delayed almost a month because we couldn't get the levels down enough to start treatment again.  I struggled all during treatment with elevated levels.



DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15

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Post Options Post Options   Thanks (0) Thanks(0)   Quote Kellyless Quote  Post ReplyReply Direct Link To This Post Posted: Mar 01 2018 at 10:56am
Arena - have you changed anti-nausea meds?  The first time I had TNBC, with the AC & Taxol, Zofran did a good job of keeping the nausea at bay (taken with Compazine).  This time with Carboplatin and Taxol it did NOT work.  I ended up on Emend - just another anti-nausea med.  Each of the cancer anti-nausea meds works differently, most are neurological, and there are several. They upped the Aloxi I was getting during chemo as well and that helped.  A friend of mine ended up on Kytril, She's doing Taxol, Carb & Keytruda right now. it's done the trick for her.  Everyone is different, if you are having nausea to the point of it affecting your life, give another medication a go! 
I also ended up adding low dose Ativan (Lorazepam) to the mix and it helped as well. 
If you actually vomit, you NEED to change drugs - with todays options you should not vomit from the chemo.  Until I added the Emend and Ativan I was too sick to move this time, and did start throwing up after a couple of weeks.  I should've acted faster - that was misery! And I ended up hospitalized which was no fun at all. 
Recurrence sucks!  But you can do this - I promise!
IDC, 2.2 cm, Stage IIb,lumpectomy 1/30/09 ACx4,Tx4 36 rads
6/1/17 Local recurrence same breast, same spot 1.8cm Carb.4x every 3 wks, Taxol 12x once wk. Dbl Mast. PCR!! Reconstruction fail, NED!
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Prestonsmother Quote  Post ReplyReply Direct Link To This Post Posted: Mar 03 2018 at 2:38am
Hi,

Thanks for the advice. I did talk to my nurse about the nausea. She told me to keep taking the zofran instead of compazine. Originally, they just wanted me to take zofran the first two days after chemo, but since I’m not having any issues with constipation, she told me I can continue to take zofran for the nausea.
The nausea has subsided for now.... until the next cycle...

Arena
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Kellyless Quote  Post ReplyReply Direct Link To This Post Posted: Mar 03 2018 at 2:45am
Arena, Zofran made me so constipated this time!! I would definitely change to one of the other anti nauseas. I also took class daily, a hot of milk of magnesia and another thing... I'll look it up. But Zofran was my culprit mostly, switching to Emend really helped . I took compazine both times with no jssues, it's an old, safe drug.
IDC, 2.2 cm, Stage IIb,lumpectomy 1/30/09 ACx4,Tx4 36 rads
6/1/17 Local recurrence same breast, same spot 1.8cm Carb.4x every 3 wks, Taxol 12x once wk. Dbl Mast. PCR!! Reconstruction fail, NED!
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Post Options Post Options   Thanks (0) Thanks(0)   Quote cheeks Quote  Post ReplyReply Direct Link To This Post Posted: Mar 03 2018 at 3:01am
Hello Arena,
Id like to add my two cents if you don't mind. Just another vote for the Emend. I was given Emend for my first occurrence. It took some work on my oncologist part because it's very expensive and my insurance didn't want to pay for it...I think she must have told them nothing else was helping or she was afraid I wouldn't do chemo if I had the least bit of nausea. Long story but I had absolutely no nausea or constipation the entire time. Get the oncologist to push for it for you.
I don't know what this time around will be like but I'm sure asking for it again

Blair
Lump found 11/08
DX: 2/09 @52 TNBC
L. Mast. 3/26/09, SN-, BRCA-,
4.5 cm (post surgical)T2NOMO
Chemo: 4/09-10/09 Taxol x 12,
A/C x 4, No rad.No recon. NED 1/17. New Primary right breast TN, 2/2018.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Mar 03 2018 at 12:57pm
Blair,

I wanted to let you know about Emend too.  During my first time, I would get the Emend pills to take after chemo and yes they were super, ridiculously expensive (without insurance).  When I had the recurrence, they changed the protocol and put the Emend in the pre-treatment meds I got before chemo.  They did it because of all the insurance issues they were having for patients.  It stopped the problems of patients having insurance issues covering the drug.  

Donna
DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15

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Post Options Post Options   Thanks (0) Thanks(0)   Quote cheeks Quote  Post ReplyReply Direct Link To This Post Posted: Mar 03 2018 at 2:51pm
Donna,
Thank you and that is great! We are still at Bill’s moms house but heading home Monday for a few days. I am sure I will know my surgery date sometime this week and will let you know.
Have a wonderful weekend.

Blair

Edited by cheeks - Mar 03 2018 at 2:54pm
Lump found 11/08
DX: 2/09 @52 TNBC
L. Mast. 3/26/09, SN-, BRCA-,
4.5 cm (post surgical)T2NOMO
Chemo: 4/09-10/09 Taxol x 12,
A/C x 4, No rad.No recon. NED 1/17. New Primary right breast TN, 2/2018.
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