Spring 2018 Starting Hormone Blockers

Veeder14

Hi flowergal,

I'm glad to hear your doing well. Good luck on your one year mammo and ultrasound. Be ready for several extra mammo pictures as the radiologists has to see a new picture of your breast.

I'm pretty much recovered from my hysterectomy although my back, neck, and shoulders are still painful from the position I was in on the operating table. Working on getting back in shape since I got cleared for exercise. Meeting with the MO this Thursday regarding getting back on the Tamoxifen and my stomach issues. I wish the hormone blockers didn't have so many side effects.

JosieO

Hi good friends,

Paco - I join everyone in expressing concern for your hair loss. That is traumatic after everything else. Hoping a medicationbreak helps.

Veeder - glad to know you are on the road to recovery from your surgery. I know you are hoping to get back to exercise, and I pray you’ll get some good direction on Tamoxifen and taking care of your stomach.

Flowergal - I join Veeder in wishing you a good one year followup. I had a 3D mammogram gram at mine vs the standard 2D, so I didn’t get as many new pictures as I thought I would.

Wishing all of you good health and a continued return to “normal” (whatever that now is for us)

Veeder14

Hi All,

Appointment today with the MO since finding out about the thickened uterine lining and post hysterectomy surgery. She acknowledged the MO 2nd opinion report that recommended ALs. It seems getting a second seem to upset her, oh well. She tried to push AL's on me even with my severe osteoporosis and need to take the PPI stomach medication which depletes Calcium which I would still need to take with whatever pills I take. I have a referral to an Endocrinologist to discuss what bone medications would help my osteoporosis. I've already been to Rheumatology in the past, took some medications, but I agreed to go anyways. App't not until April. Melanoma doctor is making a referral to GI but it takes 6 months to get in and I'm not sure what they can do. Don't want another procedure (another endoscopy) which will in turn irritate everything including my back.

Meanwhile, the MO said to go back on the Tamoxifen after giving my stomach a few more weeks to heal. So starting March 1st. She mentioned a couple of things: 1) such as she doesn't believe the Tamoxifen gives patients acid reflux/stomach issues. I guess her patients don't complain about that problem?? 2) There's a lot of patient non compliance with hormone blockers and how "they" know is that the pharmacists report (to whom I don't know) when patients don't pick up their prescribed medication. Great, that didn't add anything positive to the appointment. I guess no empathy for patients struggling with horrible side effects long term while trying to live their lives. 3) PPI medications long term are causing Dementia. I have to check this one out.

I did get her to acknowledge that periodic blood tests are important. So I have orders waiting when I decide to get it done probably after being on the Tamoxifen for awhile. Got the issue resolved of having the mammogram (insurance will only approve exactly 360 days since the previous one, and MRI separated by about 6 months. In Nov and early Dec has both which not only totally messed up my back, etc., but a year goes by without checking for recurrences.

Not the greatest app't but all I can do is take stomach meds and hope the Tamoxifen doesn't cause permanent damage.

JosieO

Hi Veeder,

I've been wondering how you were doing, so thanks for checking in...

My first impression of your appointment today was PHEW. It's hard to be professional and respectful when a physician seems to react emotionally. So I give you credit for the way that you conducted yourself. I personally think no physician should appear less than supportive of a second opinion- it's your body and your health and you have to know that you have the best info. So glad you did it, and continue to take the high road as you have.

I also think you are doing the right thing by involving other physicians. For you, it's not “ just" a breast cancer issue-this is your digestive system and your bones involved. So while I am sorry the processes will take a bit of time to happen, I think you are doing the right thing. Continued strength to you as you maintain the right attitude and look out for yourself.

Prayers for you that your stomach can handle it. You are a real trooper-many others would have given up in frustration.

I often think that although the breast cancer physician community takes credit for the introduction of AI into treatment (and it was a major advance),more must be done to find ways to protect the bones from osteoporosis. And in ways that are not leaving long term side effects.

Strength to you, and keep us posted.

flowergal

Hi Veeder and Josie,

Josie, you said it eloquently about Vedeers vist . I would hope my doctor would understand if i wanted a second opinion. I think it is imperative to have trust in your doctors abilities as well as be able to have a good pt/Dr. relationship . My MO is nice but I see him for 1-2 minutes and he always stands as if he is in a hurry. I usually see a PA or NP and then he comes in briefly . The last time I was there, I saw an NP who was just filling in and I hope the regular gal returns after maternity leave.

Veeder, My issues seem very trivial compared to yours and I do hope you will get the answers you need and find something that works for you.

The biggest issue I have relates to flying and the risk of lymphedema occurring in my arm due to this. I have read several articles on line and there is a lot of conflicting info about whether to use a compression sleeve as prevention .My LE therapist had said it was not reccommended but then said to ask my MO and maybe get an order for a sleeve. So when I asked this NP i saw , she basically blew me off and shrugged. When I asked if the MO would know what was best, she just laughed and said " no he wouldn't but she'd ask him". I am sure she didn't because when I saw him, he didn't even mention it . I see the surgeons PA this month and I will ask her as well and if I can't get an answer, I will check with my LE therapist again. We celebrate 50 years of marriage this year and want to go on an Alaskan cruise which may involve flying to the west coast and I am so arfaid of developing LE in my arm as I am also left handed and this would be very debilitating to me.

Sorry for whining. I need to just stop worrying and live my life!

Veeder14

Hi flowergal,

Nice to hear from you. Thanks for your comments. When I went to the Lymph PT she had a rep from a company to do the measuring for the arm compression sleeve, and leg sleeve, plus compression bras, and shirts for me. I'm not sure exactly how they got a physician's order and authorization for the items but they did. I'm not sure why your LE therapist doesn't think it's necessary. My therapist said wearing a sleeve is preventative so LE doesn't develop, and can't hurt to wear one. I put it on after going through TSA and one hour before flying. Then leave it on for one hour after landing. I'm flying on Tuesday and have my sleeves already in my carry on.

What about asking the LE therapist's boss about it? It's such an easy thing to justify medically. I hope you get this worked out. I wouldn't fly without it especially on a long trip. You can purchase sleeves online but it would be much better if it's ordered for you. Here's one link I found:

https://www.lymphedemaproducts.com/products/medi-s...

Congratulations on 50 years of marriage! Your trip sounds wonderful.

flowergal

Thanks so much for your response Veeder! That makes me feel more like pursuing the issue with my therapist and MDs. ALso, what type of bras do you use? I have had trouble finding any that fit comfortably ( with a person fitting them who is supposed to know what they are doing) . The one that seems to work the best is the bellise which I had to pay for myself which is fine as it works but in the summer It gets hot. I did order a sports bra from Kohls that is by Amoena that they claim is for post breast surgery compression so I am hoping it will work. I can get medicare to pay $42 for 6 per year if i buy from a store that will file medicare for me so I will be trying some new ones on soon at our local store that specializes in bras and mastectomy bras . Now that I know more about what I need, I can make better informed choices . actually, the link you sent is where I ordered the bellise and my swell spots and they are based in the town i grew up in-Jamesburg NJ and I had the nicest chat with the rep the first time I callled them- Small world!

I am starting to explore cruise options to Alaska and I have a sister in San Francisco and may see about combining trips. She went through throat Cancer tx a couple years ago and is doing fine.

Take care !

Veeder14

flowergal,

The compression bra that was purchased for me is "Wear Ease" brand. It zips close in the front and has a substantial zipper. It's comfortable sort of, but also feels like I'm in a straight jacket! The tightness affects my back/shoulders. The therapist said to wear the bra for several hours per day. The rest of the time I wear sports bras. from very light ones to heavier ones I don't know what brands they are but bought from Hanes, and VF, and Target.

If you decide to spend some time in SF let me know. I'm about an hour north of there.

flowergal

Thanks Veeder for the info. I have looked at the wearease and may order one . I will let you know if we go to the west coast. I would love to meet you!.

star2017

Saw my MO yesterday. I had my ovaries and tubes removed over three months ago, and we talked about switching me from Tamoxifen to an AI. I just got a new stock of Tamoxifen, so we'll wait until my next appointment in three months to make the switch. I'm upping my Vitamin D and Calcium. Need to get a bone density scan as a baseline. Otherwise I'm doing okay. I get the occasional hotflash, but they are mild.

JosieO

Flowergal,

Glad to see you here, and let me add my congratulations on your wedding anniversary-it’s a beautiful accomplishment.

Of all people, I would hate to see you get damage to your arm due to flying. You have been such a strong source of and advocate for preventative care. You deserve no less. What I know about lymphedema I owe to you.

As Veeder suggests, I would be direct but firm, and get the sleeves and other gear that you need for travel. (In my working career, I flew for my job at least three times weekly. If I were doing that job now I would not get on a plane without a sleeve.)

Please doit,

JosieO

Star,

Sounds like you have been busy, but a good kind of busy, getting good treatment for yourself. It sounds like you will be equipped and prepared to make the switch from tamoxifen to an AI.

Wishing you continued strength and good health

Paco

Thanks ladies for your well wishes.

Just for your information, along the lines of what Veeder noted in her post, get regular blood tests if you are taking Tamoxifen. I was on Tamoxifen for 9 months and have been off for about 2 weeks now. I had an appointment wth my primary doctor and she ordered a blood test for me. Turns out my ALT and AST levels (testing for liver enzymes) are abnormally high and my WBC (eosinophils) were down close to 0, i.e., abnormally low. Both of those indicators are normally due to alcohol abuse. I drink very little, maybe one drink or at most two per week, so there is no way my liver is affected by alcohol. It is likely due to the tamoxifen.

This only confirms my decision to come off the med. I had early stage cancer, so my doctor gave me her blessing to go off, but please be careful if you are going to take this medication.

star2017

thank you for the heads up, Paco

flowergal

Hello everyone- Just thought I'd share my good news. I had my 1 yr. mammo. today and it was normal! I also discussed again with my Le therapist the flying /sleeve issue and she recommended wearing sleeve and glove for flights over 3 hours long as a precaution. So I got an order for both in anticipation of going on an Alaskan cruise this summer and feeling better about flying if I have a sleeve to use.

Paco, good luck off medication . I get lab every 6 months per the MO including liver function, chemistry profile and CBC and 2 "markers" tests to check for signs of metastasis..He said this would be done every 6 months as long as I am on anastrazole.

Josie- thanks for the good wishes