Starting Chemo March 2015

Avmom... I'm so sorry! I'm having my prophylactic mx in a week and a half and scared for what they might find. I also have a clean mammo/no lumps. I don't want to do this but deep down I know I need to do this, better to find out now than later. Know yours was prophylactic too...and while the news sucks it's good it's out now! Will additional treatment be necessary?Hugs!

PB

Oh lol, SpecialK and I cross-posted. SpecialK, thank you for being there for all of us - I knew you would be able to jump in with the right explanation!

Yes, thanks SpecialK you answered my questions.

Thanks Avmom.

PB

Italy - no problem - I'm here!

Also, wanted to add that I had a prophylactic breast full of ADH and ALH that had previously been undetected, as the only way to see it is in a biopsy sample, since it is of abnormal cells, but not necessarily a discrete mass. I image poorly - the mammogram missed my palpable 2.6cm IDC surrounded by DCIS, that was in the ducts and had also traveled into the lobules.  I have looked at those images with the radiologist both before and after diagnosis - there is nothing there at all to indicate cancer of any kind. The IDC was only found by ultrasound that immediately followed the mammo, and the post-dx/pre-surgical MRI missed my larger .5cm cancerous node. If I had not self-elected a BMX I feel reasonably sure I would have experienced a second primary in the non-cancerous breast down the line, especially in light of having both types of dysplasia there. I think this happens more than people think - there is surprise DCIS, LCIS, and invasive cancer that does not show up, it illustrates the limitations of current imaging, and is one of the primary reasons I decided on a more extensive surgery than was initially offered.

Avmom--Curious as to why your MO or surgeon suggested a prophylactic MX. Was it because you were triple negative?

Special is smart enough she probably lets the docs think they're having all the good ideas.

Avmom-so sorry about the surprise path. But I think like the others said there is a silver lining there. It's out now and f$&k cancer!

My brother and other house guests are gone. I also feel fatigued most if the time, today more than ever. But they were great visits. Jack and Tutti got lots of extra attention.

Amber- just wanted to add that I'm sorry you're down. Sometimes it seems you'll never feel good again. Thinking of you and sending a hug.

Avmom, so glad they caught it, and that the decision to do the "prophylactic" was so useful.

Just as I thought - my MO's office did not get the MRI approved. The insurance claims that the radiologist who told me to follow up with MRI in 6 months "left off something from the original report" (very vague) and so that's why they want me to do the mammo and ultrasound first. If these two tests look suspicious, then they will approve the MRI.

The radiologist didn't tell me to do mammo or ultrasound in 6 months. He said MRI. I guess insurance wants to pay for the mammo, and the ultrasound, AND the MRI, instead of just the MRI Also, waste of my time.

I'm sorry you're dealing with all the run around BB, that stuff drives me crazy!

avmom-thank goodness you had the prophylactic mx...it makes me think about my "good side" too. It had atypical hyperplasia but hasn't seemed to change since 2011.

Theresa-I love the costumes! I loved that show. You do not look like a pumpkin btw-you're beautiful. Also please don't feel the least bit nervous about the naltrexone and success or not. I've been dealing with this autoimmune disease for about 4 years and my expectations are low. I knew about the naltrexone blocking the opiods...that's why I was on the lowest dose of butrans patch and it wouldn't have made a difference if I'd left it on the full week because it keeps a constant level. I just wanted to be off all opiods. She did prescribe a few hydrocodone to take to lessen the effects during the transition. I took two earlier today but otherwise just sucking it up. I'm only on 1.5 of naltrexone and the pharmacist stated therapeutic levels for sjogren's and related disorders is around 3-4.5mg. Didn't notice any difference day 1 but too soon and prob too low dose. Thank you so much for your support regardless of the outcome:)

Amber-Sending you some positive vibes. You are really being dealt a lot, it's bound to get better:)

Katy-good to hear from you and thanks for receiving my silly emails! Jack looks quite warm and happy. I know you're worn out, me too after Jess blew through! I did get a message she made it to Kenya so whew for now.

PB-what is the date of your surgery? I want to remember to be thinking of you:)

Got my Best Buy credit card bill. Balance last month 745.09. No purchases. 25.00 payment. No fees but my promotional rate ended a few days ago and they socked me with a 221.48 interest charge so new balance 941.57!! I wanted to throw up. I never pay just the minimum but our finances have been so stretched I had no choice. I'm such an idiot for not looking over the bill more closely but it just feels criminal! I'm going to call tomorrow and maybe I'll try the cancer card...it's worth a try but lesson learned. ughhhhhhhh

Diane...you are so thoughtful to want to remember...I'm having my prophy mx and ovaries removal Nov.11

PB

Theresa-my rheumatologist was actually looking up the dosage while I was in her office. She wanted to start low and then increase. She said something about it taking "a few months "to tell if it would help! I don't see how it would be necessary to wait to increase if I'm not having any ill effects. I have woke up with my heart kind of racing and loose poop:) Maybe unrelated and tolerable anyhow. I'm not sure if it will help this kind of pain, seems neuropathic and by bedtime I'm ready to scream! Previously only in the vaginal area but since rads I have it on both breast areas, my stomach and tops of my legs. More so on the right side which is the mx/implant side. I feel like I should be able to figure this out, I'm missing some important clue. I did stop the Tamoxifen about 3 days ago. I'd researched that "crawling skin" sensation and found that during menopause this symptom was "common." That made me think that the combination of tamoxifen altering my hormone levels and and increase in that sensation; maybe they're related? I also was having hot flashes throughout the day and the final straw was having to go outside in the cold when my daughter was here...we were fixing dinner and everyone was happy and feeling good and I'm sweating bullets repeatedly...I know she felt badly after but the window was cracked and I saw her look out at me and heard her say "I don't want to get old." It was innocent and she didn't realize I heard but I fell apart inside. I stopped the medication that night. I will t/w MO next time I see him and maybe give it another try but quality of life is so important to me and my kids the most important. Just typing this is making me drip tears on my laptop, boo hoo. This probably isn't the appropriate forum for my complex and crazy health issues but it feels good to "talk" about it. When this all started I suffered the humiliation of my gyn stating "I don't see anything, it looks good." Suggestions of maybe a psychiatric origin. Fine. If I could talk therapy myself out of this daily shit I'd sign up this weekend! The best way to describe it is the feeling like having pure wool against your bare skin....not fun. So way off subject but yes I'm going to call her office on Monday to see if she can leave me a rx for at least the 3mg dosage. Can't see a reason to wait? thanks for listening

SpecialK-I too admire your knowledge and advocacy. Very impressive:)

I've been away from this forum for more than a week because work just crazy exhausting and have been trying to catch up. I am sorry to hear of all the insurance, pain, infection, treatment headaches...when does it end? I never stop thinking of everyone and sending good healing thoughts individually as I read posts.

We are having open enrollment now too with a big push for us to choose the high deductible/HSA plan. It is a lot cheaper up front but fact even the insurer is pushing it makes me biased to go for the more expensive plan, even though the out of pocket for that plan went up too. Not looking forward to Jan 1 when have to start paying cash up front all over again. Makes me want to go get a full body MRI before the end of the year as I know if I need one after January I will be paying dearly. One of the first things they asked me for when I went for my diagnostic mammogram last January was a check for the amount of my deductible as a deposit. Still getting bills from the radiologist even though haven't been there in months.

I'm losing eyelashes like crazy and it is just irritating the heck out of my eyes. Vision is pretty bad, especially on rainy nights I probably shouldn't drive at all. Finally started PT and, much as I like the place and the therapist, neck and head muscle spasms are not fun. Heating pad is now my best friend. Have to get in shape for the snow shoveling/car windshield scraping morning routine. I don't think I'll have the offers of help I had last year after surgery. Also finally went and got a regular prosthesis instead of the foam ones I've been using. It creeped me out and sat in the box for about a week before I made myself start using it. I still don't like to look at it or think about it at all, though it matches the other side pretty much and is comfortable. The lady who sold it to me had a lumpectomy more than 30 years ago. She looks great and gave me hope.

It is a beautiful fall weekend here. Hope the weather holds out for the trick or treaters, they are so cute!

Diane, the loose poop is probably from removing opiates, they tend to be constipating. I understand her approach about starting out slow, but my son in law went right to 4.5, although he is heavier than you, and after a few nights of lots of dreams he said he now sleeps the best he has in five years. Naltrexone seems to stimulate endorphins, so maybe that's what you were feeling. Are you trying low dose magnesium for the hot flashes? It might be worth a try, others on here said they think it has helped them. I also do magnesium baths for my neuropathy, so if the magnesium orally gives you more loose poop you could try the baths, they don't seem to make me have as many poop issues. I do a lukewarm bath with the Epsom salts, feels pretty good. I stay in there at least 20 minutes, and Epsom salts are dirt cheap. The residual neuropathy I have left is the feeling like I touched my fingertips to a hot griddle, no fun, but it's more of a burnt tip feeling than actual pain. The MO said that probably won't ever go away, but hubby says don't worry, he will get it taken care of. Love that man!

As for the Tamoxifen, I am not on it (no hormone receptors), but I have seen women post to try a different form from a different manufacturer. So maybe try that before you give up completely? Opiate withdrawal is a funny thing, so hard to tell whether you are having tamoxifen effects or opiate effects. I don't know about naltrexone taking months, my son in law had improvement in a few days. But maybe she meant because you are on the lower dose. Since you have the 1.5 size, maybe a call to her to see if you can try taking two of them until you run out of the current supply? How many days have you taken it?

I so want this to work for you. I want something to work for you.

Have you had a blood panel run recently measuring your magnesium, potassium and sodium levels? Electrolytes are a funny thing and can really cause problems if they are out of balance. My potassium went low during chemo and I could tell. And because I sweat so much, my sodium is always on the low side, and sometimes I literally lick a handful of sea salt to get relief.

At least your rheumatologist has been receptive to trying the naltrexone.