Welcome New Members - Wife just starting chemo, TNBC + Addison's

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Wife just starting chemo, TNBC + Addison's

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Topic: Wife just starting chemo, TNBC + Addison's

Posted By: Bayside
Subject: Wife just starting chemo, TNBC + Addison's
Date Posted: Jan 21 2014 at 1:19am

Hi - this is my first post here. My wife was diagnosed triple negative with a biopsy in November after discovering a lump. She had a lumpectomy on 12/4 and the tumor was 4cm, grade 3, stage 2A, with clear margins and the 2 sentinel nodes were clear.

Now she is scheduled for TCx4 starting at the end of this month, four cycles of Cytoxan and Taxotere, to be followed by 6 weeks of radiation.

We have no idea what to expect. She is 70yrs old and also has Addison's disease so we are co-ordinating with the endocrinologist.

Any thoughts or suggestions welcome. thanks

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wife DX IDC TNBC 11/13. Grade 3, Stage 2a. Lumpectomy 12/13. margins clear, 0/2 nodes

Replies:

Posted By: mainsailset
Date Posted: Jan 21 2014 at 9:06am

Welcome!
I have TNeg and my sis had Dbl Neg BC, and undiagnosed Addison's. For my sis, being undiagnosed it meant she was fighting a double battle, one with help one without help. Addison's is nothing to sneeze at and from experience I would, personally, remind the Onc team every step of the way to consider the Addison's symptoms into the mix of treatment.

   My sis was 70 when she was dx'd as well. What we found was that the Addison's promoted the nausea and then vomiting. So extra care, since your wife is dx'd (my sis wasn't until well into treatment) to make sure that she doesn't head towards a path of nausea & vomiting that would be rotten for her and interfere with chemo. It is manageable but I'm thinkin she would want to be taking more frequent testing than normal to verify her Addison's status before and after chemo. I'm not a medical professional but I noticed how hard it was to bring her stats back to normal once she went sideways.

   I did notice some time ago that MD Anderson lists on its site that they do alot of work on Addison's in relation to treatment so I'm thinking that adrenal stress and/or Addison's is something everyone should be on the lookout for.

   The adrenals, as I'm sure you're very aware of, also effect BP and the thyroid. As chemo often impacts the thyroid and depending on her chemo can also effect BP that may be something you'll also need to keep an eye out for. When they do the bloodwork tests before each chemo your onc may want to add in the thyroid test.

   I'm so thankful that you already know about the Addison's going in. I have to think it will make all the difference in the world in the success of her treatment. Do start asking the doctors for copies of her bloodwork and keep them in a 3 ring binder. It will give you your own mechanism of tracking and you'd be surprised how helpful that can be. I also got copies of all my scans & procedures and was able to get copies sent to appropriate 2ndary or primary doctors. Your whole team needs access on a regular basis to the bloodwork results to give you the best input.

Mainy

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dx 7/08 TN 14x6.5x5.5 cm tumor

3 Lymph nodes involved, Taxol/Sunitab+AC, 5/09 dbl masectomy, path 2mm tumor removed, lymphs all clear, RAD 32 finished 9/11/09. 9/28 CT clear 10/18/10 CT clear

Posted By: Bayside
Date Posted: Jan 22 2014 at 10:18pm

Thanks mainsailset. We've lived with the Addison's for 37 years so we're really aware of the need to keep on top of it and avoid hypoadrenal crisis. Several times in the past when she's been unable to keep food down and take her hydrocortisone we've had to go to the ER for IV fluids and meds. The good thing is it resolves very quickly.

The oncologist and endocrinologist have spoken and have a detailed plan now. Her thyroid tests fine, and we are always on the lookup for low BP or dizziness.

Thanks about the blood work paperwork hint. I've been trying to get it all set up so we get them electronically but some of the doctors are on different systems.

Friday is a full PET/CT scan, then the oncologist again, then the port, and she'll likely start the chemo early February.

Still we don't know what to expect in the first few days after....

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wife DX IDC TNBC 11/13. Grade 3, Stage 2a. Lumpectomy 12/13. margins clear, 0/2 nodes

Posted By: mainsailset
Date Posted: Jan 22 2014 at 11:02pm

I had a lydocaine reaction which is what they use as a local to access the port to introduce the chemo. The first time around is always an filled with anxiety BUT once you're over that hump strangely for me I noticed that the people I was sitting with for the treatment were some of the nicest people I've ever met. I don't know how that happens but strangely I made friends easily and we all became a very closeknit team. The oncology nurses are some of the kindest most skilled in the business and it's hard not to want to hug them.

Our clinic gave free lunches to anyone who was there, and a large buffet of treats. The chairs were actually loungers and very comfortable. I mention all this because one can't help but think that you're entering some kind of dark ages torture chamber when in fact the rooms are light, very comfortable and friendly. The atmosphere couldn't be better.

It sounds like you're definitely on top of the Addison's. The chemo changes your chemistry so it's part of the job to keep after the changes. It is definitely frustrating when different members on the team are not in the network and can't access. Time after time it proved helpful to have my own 3 ring binder with my notes on the scans and bloodwork, sometimes the network was down and I was the only one with the record!

Best of luck to you both!
Mainy

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dx 7/08 TN 14x6.5x5.5 cm tumor

3 Lymph nodes involved, Taxol/Sunitab+AC, 5/09 dbl masectomy, path 2mm tumor removed, lymphs all clear, RAD 32 finished 9/11/09. 9/28 CT clear 10/18/10 CT clear