Diagnosed/treated 2018 -- Sharing our "what's next"
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Inna- I do hope 2019 is a more positive year for you! I hope you are better now and will continue to heal. I also have LE ( breast ) and went though all the therapy for it and do the manual exercises and wear compression bras 24/7 . I hope yours is under control.
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InnaB2018,
Agree, you did have a hard year. Sometimes one is just in a numb kind of fog, listening yet struggling, feeling that fear and sadness become overwhelming at times. Kudos to you for being able to look past it now-that is a sign of your strength.
Continued good wishes going forward.
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The anniversaries are starting....Diagnosis March 15, Double mastectomy April 22....I came across an email at work from a year ago scheduling leave that made me cry. I remember being so scared of the unknown. I cried myself to sleep for weeks. I'm glad 2018 is in the past. If or when the other shoe falls I'll cross that bridge then but for now I plan to garden, do art, succeed at work and try to stay healthy. My only health challenge at this point is that I'm gaining weight either because of Tamoxifen or from residual chemo - so I'm back to counting calories and trying to at least not get heavier. This next week I'm getting a final touch up from my PS. He's doing a in-office nip and tuck on a 'dog ear' that bulges up over my bra a little behind my arm. I read back on this and am still uncomfortable with how vain I sound but then give myself a break - I've been bald and have had my breast cut off this last year.
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inna- you're right. Wow. 2018 was a horrible year for you. Sorry to hear about your diagnosis and the deaths of your family members. Since 2018 was so tough I'm hoping you began 2019 with more joy and stability.
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Oh, I really hope so! Thank you, ladies
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anniversaries...the one year of my lumpectomy was early this week. Remembered how glad I was to get clean margins and no pain. Remember especially the care and compassion of my surgeon. I then awaited the healing of my incisions to be able to start radiation late May.
Thoughts of strength and support to all of you.
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josieO- congrats on your one year anniversary of your lumpectomy. And it's really nice you can remember the compassion of your surgeon. How are you doing?
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Jo6359,
Thank you for your very kind words, and for asking about me. Overall, I would say I am doing well. The positives-i’ve been able to keep my weight steady after losing excess pounds, keeping my exercise up, and continuing to focus on a healthy diet. Minimal side effects from my AI. An outstandingcancer team who I owe my life to. A lot to be thankful for. The negatives- still fighting to keep family stress at bay, the occasional fear of recurrence.
But thankfully I can come here and encourage and be encouraged by all of you.
How are you?
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All,
Forgive the very late timing of this post, but just wanted to wish all of you a Happy Easter or Passover if you observe either. Good health to all of you
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Thanks Josie
Today is Earth Day so happy Earth Day to all. ! Hope everyone is enjoying some nice Spring weather.
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Hi Flowergal,
Thanks for checking in and the Earth Day wishes. As for spring, starting to see green grass and buds on trees here, so will take it
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Hi Everyone,
Here's an update about me..I had a follow up app't with my MO yesterday. This time she actually listened to what I had to say. Discussed how the Tamoxifen is upsetting my stomach even on huge amounts of stomach meds, and my concern that I don't want permanent stomach damage. She suggested i follow up with the GI consult even though I don't want any more invasive tests since it makes my back, neck, and shoulders worse. She said that she's looking at the long run and the more Tamoxifen i can take the better even if i need days off to rest my stomach. So I decided to keep taking it and see how my stomach does. I've modified my diet as much as I can.
I asked her opinion about using Estrace cream for vaginal irritation, etc., and she said that the tiny amount of estrogen does not go systemic, and she was fine with it. She wrote me a prescription. I've been using it for the past 5 years but only a couple of times since Jan 2018 DX. I seem to only really need it 1x/month or so anyways.
She's getting my MRI/Mammogram back on the 6 month schedule by splitting it up. MRI in August, and Mammogram next Jan that hopefully insurance will approve.
Had those pesky seromas in my armpit drained yesterday for the 6th time! I think it was a mistake and I shouldn't have had it done. There was hardly any fluid as what was in there has turned solid. I don't know if that is normal or not but at least it's on ultrasound for comparison later if necessary. The resident wasn't very skilled and it took a long time of laying in a very painful position for my neck, back, and shoulders. The radiologist wanted to and sent the fluid to the lab this time. Hopefully, everything is ok. That's the end of draining the seromas for me.
Meanwhile dealing with Vertigo again so severe i'm in bed again. Might be related to all the pollens in the air from super bloom.
I hope everyone is doing well.
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Hi, Veeder, good to hear from you and get an update.
I'm dealing with the thinning hair (wearing a hat when out in the sun even though I dislike wearing them! Figure I'd dislike a sunburned scalp even more), some episodes of brain fog and lassitude (getting up and moving seems to help when I can motivate myself to do it) and dry skin from Tamoxifen. Right now I'm going to physical therapy to learn how to deal with pain from trochanteric bursitis and arthritis in my right hip-- it's looking like I will have less pain but not be totally pain free. My mother was so right when she said the golden years are really tarnished brass. However I was very glad to learn the hip pain was arthritis, not mets--interesting how having BC changes one's view of things.
Still on the checkup every three months and mammogram/ultrasound every six months schedule and still find them reassuring.
Hope all are doing well and enjoying the arrival of spring. Some folks had a really tough winter but the sunshine is returning.😊
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Hi Veeder and Beaverntx,
Very glad to hear from both of you.
Veeder: glad you have continued to ask questions and make sure that your concerns are being heard. I don’t blame you for wanting to be careful with your stomach-you’ve already endured so much. Also glad that you are getting some relief from the cream. As for those totally frustrating seromas, please don’t be hard on yourself. You made the best decision possible with the information that you had. Hopefully you can stop and the remaining tissue will “settle down”. But very sorry to learn of the vertigo. Please take care.
Beaverntx:;Yes, have to be careful to not sunburn your scalp. Do you think that Biotene might help? Somewhere on this site i’ve been reading about some device to use for hair loss. If you don’t find it in a search, i’ll look again at the different categories and try to find a link for you. Yes, I agree that after BC symptoms take on new meanings-glad for you that it is arthritis (the lesser of two evils). But the good news I saw in your post is that your medical team is keeping to a consistent followup schedule-shows that they care.
Continued best wishes to both of you, and prayers for continued good health.
Look forward to hearing from some of our other dear friends.
Finally, HURRY UP SPRING (!!!!!!
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Beaverntx,
Luckily I just found it-it’s called Irestore. Looks promising. Here hopefully is the thread:
https://community.breastcancer.org/forum/6/topics/871124?page=1#post_5391657
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Thanks,Josie. I think I had read that discussion. I've been considering looking into that but plan to try biotin first--maybe that will at least help my splitting, peeling nails!
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My hair had been thinning for years, since I had a hysterectomy in 2008. I'd get so upset at the amount that would come out just combing it or washing it. For some reason, I'm losing a LOT less hair lately. I don't know if it's the vitamin D or the biotin - it started shortly after starting biotin, but almost too quickly to make sense. I'm still taking the biotin, but I think it might be the D. My MO had told me last summer my D count was low and to double my intake to 2000 units/day.
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Hello and good to hear from you all ~ Beaverntx, Josie O, flowergal. Beaverntx, I hope physical therapy continues to help decrease your bursitis and arthritis pain. I go to PT weekly for my back, neck, and shoulders. Couldn't make it without it. I don't like wearing a hat either but started years ago after my scalp and part got sunburned and had pre cancerous cells, and were successfully frozen off. I bought some biotin shampoo to try and head off hair thinning but don't know if it will work or not.
Josie O, congratulations on your one year anniversary. It's nice to have surgery and radiation behind us.
flowergal, I hope your LE symptoms are being managed, and your doing well otherwise.
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Hello everyone ! Hope you all are coping with the various medical issues you have and continue to persevere! As Rosanne Rosanadana ( gilda radner from SNL) used to say " It's always something" I just got diagnosed with Atrial Fibrillation and had a echocardiagram and stress test yesterday. I saw the cadiologist ( who also treats my husband who has had A Fib for years) and I started on coumadin. I see him again next week to get the test results and discuss medications to control it. Since my hubby has had it , I do have some familiarity with it but it's different when it's me! Oh well, no spinach salad or leafy greens til I get regulated. I do know that radiation can cause cardiac arrythmias but I still would have done it since it lowered my risk of reoccurence from 10 to 1 % . I am enjoying the spring weather ( had a bumper crop of leaf lettuce and spinach in my little garden which my neighbor is enjoying LOL) and doing lots of gardening and weeding before the weather turns hot and humid.
The LE is quite stable and I did get the wearease bra that Veeder mentioned which is quite cool and comfortable. Veeder, I do have some hardness at the tumor site which my surgeon said was expected.
Veeder, do you do head exercises for the vertigo? My audiologist gave me one when I had it this winter and they really helped a lot. It just involves turning the head a certain way in a specific order and I still do them occasionally if I start to get the dizziness again.
Beaver RN and Josie, hope you find something to help your hair. I know there are vitamin combinations to help hair but can't think of what they are. Maybe your hairdresser could suggest something.
Well, take care everybody who posts here and Happy Mothers Day to all you moms. I don't think I'll get a present from my furry child Chip, unless it's a stick he brings in from the back yard!
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Hi, flowergal. Good to hear from you and sorry to hear about the AFib. You are right, seems it always is something! And of course you had a bumper crop of leafy greens just when they are restricted -- here's hoping that gets straightened out in time for you to enjoy some of your produce.
Yeah, don't expect my two furry friends to offer much for Mother's Day other than more of the love they share daily.
Re the hair, I'm trying Biotin. If nothing else, perhaps that will help my fingernails! Also wearing a hat when our in the sun. Otherwise, just letting my scalp shine through! Time will tell whether or not the Biotin is making a difference...
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Happy Mothers Day to all, if you aren't one you at least had one!
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Same to you BeaverRn and Happy Dog Mom day!
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Hey, ladies, I'm new to this thread. I was wondering if you could help me with some info on hair growth. It's been 5 months now since my last chemo and I still don't have hair that has filled in the baldness completely. Basically the top, especially the front, is pretty bare, so that my scalp shows through. Even my onc admitted that it's been slow to return. I'm not big into supplements, but I'm thinking I need to do something.
I did see an internist this week who ran some blood tests. My TSH is a bit low but not out of the normal range, so I guess my thyroid is ok (I'm hypothyroid and take synthroid for it). My magnesium was also ok. Is there anything else you know of that we should check? I'm still a bit anemic, but that's pretty typical for me.
I'm on letrozole, herceptin, and perjeta still. I think one of those can interfere with hair growth. I just don't want to assume it's that which is reducing my hair, when it could be some other problem I could fix.
I'm considering ordering biotin, 5000 mcg, along with some biotin shampoo. Does that make sense? Do you know if they are safe to use together? Also, are there any other supplements you think have helped your hair grow? Any advice would be really appreciated! I'm getting really tired of having barely any hair!
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Hi Fairchild ,
Sorry you are having problems . I have not had chemo and no problems with hair loss but i know some of the other gals have and have posted about it. I know there is a supplement for skin hair and nails but don't know the name of it .Maybe a nutritionist could recommend something. Good luck .
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fairchild- like you I had chemo, herceptin and perjeta. My hair started growing back within 4 weeks of my last chemo treatment. It did take at least five months before I had a thick head of hair. When it starts to grow it grows quickly. I have a mess of chemo curls. I used to have very straight hair. I have a very thick head of hair but it's still only touches my shoulders. 11 months post chemo and 4 months post H@P(one year of H@P).
It beats the hell out of being bald. Hopefully, once your hair starts growing it will grow very quickly.
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Fairchild, I am trying Biotin for my hair and nails. Haven't been using it long enough to know if it is making any difference or not so can only affirm that biotin has been recommended for thinning hair as well as for nails.
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biotin has not helped with my nails at all. My nails continues to crack and break. I never lost any of them but they look horrible. For my niece's wedding last month I actually had to get acrylic nails because my nails were so disgusting. My hair is nice and thick though. I continue to take biotin daily. It sure as hell hasn't worked for my nails. LOL
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Hello Dear Friends all,
Really good to read your posts, and hope everyone continues on a path of stable health.
Flowergal - sorry to read of your Afib. Coumadin is an old, very established drug. Having a family member very prone to clotting, it is yet another thing to add to your mix, but with the right resources Coumadin management can be handled. You probably already know these, but here’s what I have observed.
- the key to managing consumption of Vitamin k veggies (leafy greens, cabbage family, asparagus) is to be consistent in eating them. In other words, if you decide to eat them twice weekly, try to eat them with a few days in-between and watch your serving size. This way your monitoring nurses can see any developing patterns.
- if you can, get a portable meter for home use. Saves having to drive to a lab all the time, gives you flexibility on vacations, etc.
Good wishes with it and knowing you, it will not pull you down.
Biotin users - like some of you, can’t say i’ve noticed results yet. Not a lot of thinning hair, but no noticeable thickness. My nails seem to be better but I think it’s because i’ve added supplemental calcium.
My biggest challenge - IF we ever start getting sun and warmth - will be to remember to apply sunscreen much more frequently. I’m fair and always burned quickly in the pre-cancerous days, but last summer I did get some burning along the edges of my treatment area in the collarbone.
Fond wishes for a good spring and summer to all of you AWESOME ladies.
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HI Josie, thanks for the info on coumadin.I did get some lists of foods with high, medium and low Vit K content from the nurse who checks the INR and that has been very helpful. My husband has had a fib for many years so I knew most of the basic foods to avoid or use occasionally but I discovered some I wasn't aware of and I like more of the green leafy veggies than he does. Until we get me to therapeutic INR, I am avoiding them all. For those of you looking for hair supplements, I use a site called Puritan's Pride to buy my supplements and I saw they have several for hair and nails. I don't have that problem so I didn't look at them too closely but some have quite a few antioxidants, biotin and B vitamins in them. I hope you all can find something sAfe and effective.
You are right about sunscreen. Early this spring when I was walking I wasn't using any and didn't realize how easy it is to get red. I am not fair skinned so I don't burn too easily, but I put it on daily now !
Hello to everyone and hope you are all doing OK.
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I started taking Biotin before my dx, although I think my hair and nails have always grown relatively quickly. I doubt it can help grow hair where you don’t have any—just might help the hair you do have grow more quickly. I’m not sure Biotin shampoo does much but I’m sure it’s fine to use it with the supplement. I know some women have experienced thinning hair on an AI, and it seems to be more prevalent with letrozole. I believe in extreme cases a dermatologist might be able to help with hai.
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