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NEW TNBC with Type 1 Diabetes

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GeriC View Drop Down
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    Posted: Sep 12 2019 at 10:25am
Hello! I am new here - never even been in a forum/blog or group chat, but here I am. Here's my short story.

I found the marble in my right armpit on July 20th; saw my GYN on Mon the 22nd, had mammo and ultrasound on Fri the 26th; had biopsy on Aug 5th, got cancer diagnosis on Aug 9th  (triple negative invasive ductal carcinoma, stage 1). My first meeting with my surgeon was 8/12, my scheduled MRI and ultrasound was 8/14 (MRI didn’t  happen due to metal in my head) my first appt with all my cancer doctors was 8/16. At that meeting, I was told that my lumpectomy would be performed the beginning of Sept. (this has not happened.)  MRI couldn’t get rescheduled until 8/29, at which time I had MRI and ultrasound. Now I have another MRI with biopsy scheduled for 9/13, since they found more spots on 1st MRI.  This will determine if pre-discussed plan of treatment changes or stays the same (AC-T plus radiation).  I know I still have to get cleared by Cardiologist for cancer treatment before ANYTHING happens. I am so EXTREMLY frustrated that this is taking so long – it’s now more than a month since diagnosis, and it is really getting to me.

On top of CANCER, I have had diabetes type 1 since I was 17 (as well as several other autoimmune conditions) I am 44 for about 1 more month. I am actually less scared of cancer than I am my diabetes and how all the drugs are going to affect it. The word steroid shoots my blood sugar to uncontrollable numbers – and I REFUSE TO END UP IN THE HOSPITAL BECAUSE OF MY DIABETES while being treated for CANCER!!!!

Of course Cancer scares me - the chemo and steroids and effects on blood sugar levels are terrifying to me.  My cancer center does a mentor-ship program that matches you to a survivor with similar stats as you - but unfortunately they have no one to match to me - no TNBC with Type 1 diabetes. So I am asking here - anyone offer any insight to how these drugs may affect me? My Endo has a plan, but its an as you go step by step trial and error - which terrifies me.

I am reaching out - thanks for being here.

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Kellyless View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Kellyless Quote  Post ReplyReply Direct Link To This Post Posted: Sep 12 2019 at 2:27pm
Welcome Geri, I'm so sorry for your diagnosis but glad you found us. This is one of the most stressful and frustrating times in our treatment! Most TNBC cancer is grade 3 - aggressive and fast growing, so your instinct to hurry is an accurate one. But at the same time a LOT needs to happen before you start any treatment. The scans are hugely important to know where you are cancer-wise, to know what's best, and these scans almost always turn up more "stuff" that requires more testing to rule out more cancer, but it's usually nothing. I had to have another biopsy the first time, it turned out benign. There's usually the MRI, CAT scan, bone scan,  heart tests and sometimes a PET scan as well as genetic tests to rule out gene mutations (tho rare, if positive that can drastically change a treatment plan). PHEW! It's a LOT. But you are not wrong, all of this needs to happen FAST. It's best to be in treatment by 6-8 weeks after diagnosis. These days most of us do chemo first - neoadjuvant - to shrink or totally eradicate tumors before surgery, and to know if the chemo we are doing destroys our particular cancer. If you have more than one spot positive for TNBC that's probably what will be talked about, if it hasn't already. Whether surgery or chemo is first, you need as quick a chemo start date as possible, as that had proven important with our disease. 
We've had many women here going thru treatment with diabetes, more type 2, but type 1 as well. It's an additional challenge for sure, but a good medical oncologist will have experience dealing with the issues, as should your endocrinologist as well. Could you end up hospitalized? It's not uncommon for us to end up in the hospital during treatment without diabetes (I did), so of course it may happen to you as well. You've managed your diabetes almost your whole life, of course you are terrified to be told you're now going to have to do things you've always been told never to do!! But trust that they will get you thru it. It must be frustrating to not have them be able to tell you exactly what's going to happen and how they'll deal with it. That is because everyone is so different. Everyone's reaction to the chemo alone is so different, much less how their diabetes will react to it. Hopefully othr ladies will respond that went thru treatment with type 1 and can tell you the challenges they dealt with. Right now your #1 priority is to get the treatment started as quick as you can, so keep after your team. Push for a surgery date or a first chemo date hard as soon as this biopsy is behind you. And trust that you and your doctors will handle any diabetes related issues quickly as they arise while you get thru this. 
I hope you will keep us updated on your progress! You can bring up _anything_ here, we're here to listen and help if we can. 
Kelly
IDC, 2.2 cm, Stage IIb,lumpectomy 1/30/09 ACx4,Tx4 36 rads
6/1/16 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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GeriC View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote GeriC Quote  Post ReplyReply Direct Link To This Post Posted: Sep 13 2019 at 8:20am
Thank you Kelly - I do appreciate your feedback.  Congrats on NED!!!! I see you went through some pretty terrible stuff yourself - and you sound very positive!  Yesterday was my first breakdown since diagnosis and I know there are more to come. This standing still and waiting is not my thing - but I will persevere! Thank you again - I am sure I will post here and there!! This site is very helpful!
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Post Options Post Options   Thanks (0) Thanks(0)   Quote JC104 Quote  Post ReplyReply Direct Link To This Post Posted: Oct 11 2019 at 10:00pm
Hi Geri! 
I'm a type 1 diabetic for 34 years. I was initially diagnosed in July 2010 with stage 2A TNBC I did 6 rounds of Taxotere & Cytoxan, followed by lumpectomy, followed by 33 rounds of radiation at the age of 29. In January of this year I was diagnosed with a new primary Stage 2B TNBC. This time I had 4 rounds of dose dense Adriamycin & Cytoxan followed by 14 rounds of Taxol. My tumor did not respond to chemo so we tried adding Carboplatin to rounds 11 and 13 with the Taxol. My tumor still didn't respond so we proceeded with a bilateral mastectomy in September 2019 . I'm getting ready to start Xeloda since I had no response to chemo. Are you on an insulin pump & CGM? I am and found with the steroids i received on chemo days I could do a temporary basal rate of +200% and as long as I ate low carb for the first 24 hours my blood sugar actually stayed in range. My A1C is usually 5.8-6.1 if you have any questions please reach out as everyone here is so helpful! 
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Post Options Post Options   Thanks (0) Thanks(0)   Quote sophie Quote  Post ReplyReply Direct Link To This Post Posted: Oct 12 2019 at 8:38am
hi, if chemo no response , probably considering immune therapy?
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Post Options Post Options   Thanks (0) Thanks(0)   Quote JC104 Quote  Post ReplyReply Direct Link To This Post Posted: Oct 12 2019 at 8:52am
We have had issues with my oncologist.  When we suspected my tumor was growing during chemo we asked the oncologist about making a change or adding something (I had read here about sometimes adding Carboplatin), the oncologist was dismissive & assured us it was shrinking & any change was scar tissue. We found an amazing breast surgeon who confirmed it was indeed growing & reached out & suggested the oncologist add Carboplatin. Unfortunately that didnt show any change after the two rounds I had so after 14 rounds of Taxol the oncologist said our only option was surgery. I'm interested in immune therapies but am not familiar. If you can provide some info I meet with the oncologist Monday & would like to bring it up. My oncologist does not seem to be up on any of the clinical trials which is quite frustrating.  
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Post Options Post Options   Thanks (0) Thanks(0)   Quote GeriC Quote  Post ReplyReply Direct Link To This Post Posted: Oct 18 2019 at 10:11am

Hello! Wow - I am sorry for all you have been and are going through!

I just had my lumpectomy and removal of 4 lymph nodes this Monday and I am waiting for the results. Meeting with the Oncologist the end of the month to discuss port placement and chemo schedule.  As far as I know the plan for chemo is Doxorubicin (Adriamycin), Cyclophosphamide (Cytoxan) - 4 doses over 8weeks, and then 12 weekly doses of Paclitaxel (Taxol) followed by 5 weeks of radiation. This is what I was told when I met with everyone upon my diagnosis in August - it's now October and things have only just started so we will see if these change.

I am on an insulin pump and CGM - and my A1C is usually in the same range as yours. Big smile My Endo told me that 24hrs before steroids to increase my basal by .2 every hour (doesn't seem like very much). She said I may have to increase my bolus and IS factor as well - but she said it will be a process. It's just scary - knowing how steroids affect glucose levels and also knowing how terrible DKA is - I don't want to experience that along with chemo/cancer/steroids!

I did some reading on TNBC and the Carboplatin as well – and just heard about the possible biologics for TNBC. I pray with everything you’ve been doing that you kick it to the curb this time for good!

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Post Options Post Options   Thanks (0) Thanks(0)   Quote Kellyless Quote  Post ReplyReply Direct Link To This Post Posted: Oct 20 2019 at 1:10am
JC! You've had a recurrence after 9 years? Completely clear between? If yes, you're a unicorn! I'm a unicorn as well as @cheeks who hangs around here. Have you gotten a second opinion at an NCI rated facility by a doctor that specializes in our disease? It's so unusual to have a recurrence like that, we should be able to get one for you quick. 
having to deal with this at 29, then have to do it again is terrible!! I am so. very very sorry About that. And with the chemo nightmare on top of it???? Unfair. You need to explore all the immunotherapy options a for sure. A good doctor should be able to tell you all of them, along with recommendations. I went to MD Anderson and it changed my treatment. Cheeks went to vanderbilt, then did her treatment there even tho she lives far away. Last is know if you need help! 
I wish I'd seen this sooner. I've been wrapped in Moving I be Nora been online. Kelly
IDC, 2.2 cm, Stage IIb,lumpectomy 1/30/09 ACx4,Tx4 36 rads
6/1/16 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 JC104 Quote  Post ReplyReply Direct Link To This Post Posted: Oct 20 2019 at 8:43am
Hi! Yes completely clear between occurrences so we were very surprised as I have no family history & am also BRCA negative. I just started the Xeloda on Tuesday, it it's not to late I'd definitely be interested in a second opinion and any immunotherapy options as we've been very disappointed in our team in Greenville SC as they have very limited experience with triple negative cases. I'm so thankful I found this group! You guys are just the best & most helpful!
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Oct 21 2019 at 7:47am
Hi JC104,

You said you had a new primary after 9 years and were BRCA negative.  Have they done any other genetic tests on you?  They are finding many more genes associated with breast cancer risk than just the BRCA gene.  If they haven't given you a full genetic panel test, please ask about getting the test. 

https://www.color.com/learn/color-genes


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 JC104 Quote  Post ReplyReply Direct Link To This Post Posted: Oct 21 2019 at 7:59am
Hi! We did just BRCA testing in 2010 then we did a 49 panel gene test in February 2019 all 49 gene mutations I tested negative for. 
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