TRIPLE POSITIVE GROUP
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so happy for you, Trèsjoli, and thx for your input about hormone levels. G
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CENOK2017, welcome to the group and sorry you have to be here. I hope you find this board to be the life line for you that it is for me. Being triple positive means that there are multiple therapies and the road to recovery may be longer.
Tresjoli2, good news. You just made a very good point and demonstrated why it is very important to have the right MO and surgeons. It's a long term relationship. There is a commercial running on TV here where a cancer patient says "They took me seriously." That line always struck me as odd. I thought that of course they took you seriously, you have cancer. Now I get it.
I've been fighting a post surgery infection on and off for months. It looks like things are now getting better with significantly less output from the wound site. I'm tolerating the antibiotic regimen which is good since I will be taking them for some months to be determined. My infectious disease doctor is brilliant and communicates with me often. I'm having weekly blood work and get a call or message within 24 hours with the results and interpretation. I am being taken seriously.
I'm with everyone else. This estradiol/FSH/LH discussion is new to me. I look forward to learning more.
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welcome Cenok, this thread is very active! You will learn a lot here. Sorry you have to join us.
My exchange date is set! July 19th. 1 year ago to the day i had my BMX.
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yay Shela you must be so excited!
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Shelabela
What a great anchor to have your exchange on your anniversary date! What did you decide to get?
Cenok
Welcome and letus know how we can suppport you.
Vicky
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Hi CenOK!
I live in Norman and go to the Norman Regional Hospital Oncology Clinic (used to be Mercy Oncology -- long story). Today is going to be a heavy traffic day in town -- Red-White Game with a Trace Adkins concert beforehand.
Shelabela,
Congrats on having an exchange date! One more step toward finishing the triple positive marathon.
Suburbs,
Glad to hear that your infection seems to be slowly clearing up. You're so lucky to have a doctor that stays in touch.
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Does anyone have any special shampoo or hair treatment that they are using to help with regrowth? My hair is slow growing but thick on the sides and back. The top is really thin though. I tried generic Rogaine for 2 months and got nothing. I am taking biotin and iron supplements, along with multivitamin and calcium. Any help would be appreciated :
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ltwj - I used the Bosley 4-step products for a while, but found that the top is the last to fill in. Herceptin can slow growth for some, and anti-hormonals can also thin the hair, it is a complicated problem! Some have seen a derm that specializes in hair, and they say the sooner the better on that - might be worth a quick visit.
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Vicky, i am leaning towards "gummy bear " implants. My PS said they look and feel very real. He will also reconstruct my nipples.
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That sounds great and your will leave wit nipples too! BTW, I have "heard" that some PS will take two types of implants into surgery in case one does not work. Please ask about that.
I doubt I look natural for a woman my age. Mine are round with a moderate profile. My instructions to my PS was a "bought and paid for look".
Vicky
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LTWJ - my hairdresser recommended Surface Awaken shampoo and conditioner, scalp treatment. I am happy with the results after 4 months, its filling in nicely. My hairdresser taught the Look Good, Feel Better class I attended, and is a breast cancer survivor . I just stopped wearing my wig 3 weeks ago, 7 months after finishing Taxol. 2 more Herceptin to go, so hoping growth picks up after that.
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vicky, My PS said he always has a backup there. And then he said even afterwards they are never permanent. If i don't like them he will do something different. I am also a candidate for DIEP reconstruction, so plans to leave my tummy pouch alone for now. He does plan to take from my thighs and knees at time of exchange.
Regarding shampoo..... i use a shampoo that has biotin in it. I think it is Organix.
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CENOK2017 - welcome to our group, you will find lots of support, encouragement and information here. Feel free to ask us any questions you may have! We're in this together and everyone is so helpful.
Shela - congrats on your exchange date!
Suburbs, I am so happy to hear that your wound site is healing and the antibiotics are not causing you major problems. It's great your doctor is keeping a close watch on you - those infections can get out of control fast.
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I have a question on lymphedema - I'm sure there is a separate thread which I will check out but I value the input from everyone here.
So I didn't have issues with lymphedema following my mastectomy or reconstruction but my PT thinks I have it now due to my shoulder repair surgery. She gave me a sleeve and said I have to wear it whenever I fly. My question is, have any of you had problems flying or does the sleeve keep your arm from swelling up more? My swelling is barely noticeable but I'm worried flying will make it worse. I have visions in my head that my arm will be gigantic and cause problems while I am on vacation with my granddaughter.
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deni,
Because I had 20 nodes removed from my right side, I am at risk for lymphadema. However, I have never done the sleeve thing. There is actually some debate about the whole sleeve while flying business. I hope Special K drops by because she also knows a lot about lymphadema.
I would think that the length of the flight might be important. I've heard that the longer you are in the air, the more at-risk you are for a flare-up. Most of my flights are 2 -- 3 hours max.
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coachvicky, I told my PS I wanted them tne same size as the original or smaller, def not bigger, but I wanted a cute belly button 🤗 My original was a mess after the having my tubes tied and I hated it. I got beautiful breasts and tne most adorable belly button!
I bought some Nioxin shampoo as well as taking iron supplements. I’ll try this first. I still wear a bandana at school when I work, tne kids think I’m a cool hippy lady. Herceptins not over until July 1 so I have awhile. Yesterday was the anniversary of my diagnosis so I bought my DH one of those Rocky Mountain choc covered caramel apples to celebrate or commemorate. My kids used to buy these for me but I’ve never never been in tne store. Delicious but dangerous store
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Deni,
i was told to wear the sleeves 2 hrs before and 2 hrs after any flight.. lol. we have the same thoughts,i imagine my arms getting all puffy on my sides when i go for a vacation in July also..
Special K,
sometimes i feel heaviness on my hands. my LE is not very noticeable too. do you wear your sleeves all the time? or with any activity that involves repetitive hand motion?
elaine,
with the removal of 20 nodes,do you feel some heaviness at times
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Kae,
I really don't notice much difference in my right arm in terms of heaviness. Now, my armpit is pretty numb and I have to be careful shaving it (not that there's much hair left). But, otherwise, it seems OK.
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Kae - we do think alike! I forgot you’re dealing with a similar scenario as me with your shoulder issues too. I didn’t realize the 2 hour before and after rule, thanks for the info. My PT told me I didn’t have to wear my sleeve all the time but said I could wear it whenever and always when flying.
Elaine thanks for your input. Our trip later this week is a 2 hour flight so hopefully I won’t have a reaction. We have a 4 hour flight on our next trip in a few weeks.
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I fly a lot for work and also travel for fun, including international flights and always multiple legs. I do have some heaviness and throbbing on some longer flights. I have a sleeve but had lots of issues with losing feeling in my fingers, hand swelling, and other problems from the sleeve itself (and I've tried multiple sleeves.) Plus it didn't seem to prevent the throbbing and heaviness for me. I have since learned lymphedema massage strategies and try to elevate my arm during longer flights and also stretch and then perform massage when I land or arrive at hotel, etc. It also seems some of my issues with lymph fluid were not in the arm but are in the trunk and breast area, which would back up and cause arm issues. Wearing a compression tank instead of a normal bra when flying has helped me. The sleeve is definitely what seems to be the first course they recommend, but if that doesn't work, explore further.
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Meg, thank you so much for your input. This is very helpful. My PT has me doing a series of lymphatic massage and so far the swelling is not that bad. I will definitely use your suggestions when I fly in the coming weeks. I too have lymph fluid that seems to get stuck on the side of my breast and under my arm. I'm constantly doing gentle massage to keep things flowing. I'm going to purchase a compression tank, I think that will also help with some of the breast heaviness I have.
I appreciate your response!
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Hi, I'm a newbie and I was wondering if anyone has turned into an insomniac while on Herceptin and Perjeta? I will be on those forever probably, but ever since my mast last year, I sleep horribly. Has anyone's MO recommended sleep aids?
Th
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I have bi-lateral lymphedema - more pronounced in the arm with more nodes removed, but I am one of the unlucky ones that also has it from a SNB arm. I wear bi-lat sleeves and gauntlets when I fly, go to the gym, or do any repetitive motions - like gardening or heavy duty cleaning. I do not wear my sleeves every day, but would benefit if I did - it is just too hot in Florida for daily wear. I laos have a lymphedema pump - and as crazy as this sounds - I love it. I wear it for an hour and it takes the place of MLD, which I find problematic to do on myself. I get great control with it and that is also what allows me to not wear my compression garments daily. I put my sleeves/gauntlets on an hour before flying, and continue to wear them for an hour afterward, if not longer. I would recommend that if you are going to wear them, and fly often, that you allow a break in period - wear them for a couple of hours a day and work your way up. They can be irritating, and you can have some numbness if you only wear them for flying and no other time - also, never wear sleeves without hand control - either a glove or gauntlet. You can experience hand swelling if you do this - and it is much harder to get swelling out of your hand than your arm. If you don't have hand protection, and do have swelling after wearing a sleeve for flying, try to get into a body of water - ocean or pool - the water pressure can help relieve any swelling, and also sleep with your arm elevated. While flying get up and walk a few tines and stay hydrated, avoid salt. For those with truncal or breast LE a lot of people use a tight camisole or short sleeved short with their sleeves - compression wear like Underarmour.
I'm working on the hormone question, but need to go to my hearing aid appointment - yes, you read that right, lol!
always - my BS likes melatonin - it is natural in the body, breast cancer patients often have reduced levels, but if you try it work your way up to a dose of up to 10mg - it can cause some vivid dreams if you start with too high a dose. Some on this thread use Rx sleep aids, but I can't comment because I have no experience wit them. I was an insomniac prior treatment and still am - I just roll with it and don't seem to require much sleep, but I know that is unusual.
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specialk - as always, thanks for the detailed explanation and suggestions for lymphedema! I haven't been wearing the sleeve very often yet but will increase before I fly this weekend. I think the tight camisole will help too, I have swelling there too. I really appreciate your input!
I'm sorry your hearing never recovered, good luck at your appointment today.0 -
alwaysbepositive - insomnia is common, especially on chemo day due to steroids in the "pre-cocktail." If there are nights other than chemo night that you aren't sleeping, I suggest you talk to your MO. Many of us use sleep aids or mild tranquilizers. It's a stressful time and that aggregates existing sleep problems. The Arimedex also intensifies menopausal symptoms (did that at 37 and am now doing that again at 72) and hot flashes may also be making sleeping difficult. I'm also trying to keep my water intake up so of course have to get up at least once and often twice to pee and then sometimes have trouble going back to sleep.
Stay close!
Taco
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always, welcome to our group. You will find lots of great info and support in this thread!
I have trouble sleeping as well. I recently discovered a combination of essential oils that make me super drowsy. I diffuse a few drops each of Frankincense and Cedarwood for about 30 minutes (sometimes longer) before I go to sleep. I turn the diffuser off right before I turn the light off but I'll start it again if I wake up during the night and within minutes I'm sleepy again and fall right back to sleep. I read that the Cedarwood oil activates the natural melatonin in our bodies. I also meditate for 15 minutes after I turn off the light; this helps clear my head and puts my body into a very relaxed state.
We need our rest especially when going through treatment. I hope you find a solution to your insomnia0 -
welcome Always, i have had problems with sleep since i started treatment. Like deni i use a diffuser also, but i use lavender. I will have to try the other oils.
Specialk, i have had constant ringing in my ears since i was on taxol. Got worse on tamoxifen. I should set up an appointment also. Good luck today
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I had joint pain in both hips and mild anemia when I started chemo. I am 3 months out from chemo and still have these symptoms. I was reading that H/P and Lupron can cause these issues. Has anyone else had these issues for an extended period of time after finishing chemo? If so, when did the symptoms subside?
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Thanks SpecialK. was the LE pump covered by insurance?
Always, i use the anti depressant Mirtazapine, 1/2 tab is good for sleep ...( not the dose for depression, but very good for sleep, i am an insomiac and i really dont want to be on Ambien for too long)
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deni - do you have a glove or gauntlet to wear with your sleeve?
faith - has your hip pain worsened or stayed comparable to what you experienced prior to starting chemo? How long is your H infusion?
kae - yes, the pump (mine is a LymphaPress, others also use FlexiTouch) was fully covered by my insurance and was ordered by the physical therapist who handled my MLD after a particularly bad flare in the spring. At the same time I had a workup at Moffitt for the lymphatic bypass surgery some are now doing - this joins the lymphatics to the vascular system in an attempt to help empty lymph fluid from the arm, including the being the first to do a full day imaging study watching tracer injected simultaneously between each finger travel through my arms and be recorded at 15 minute intervals immediately, then at 1 hour, then 3 hours at this NCI center. I am a candidate for the surgery but it is not perfected yet and I don't feel compelled because the pump is offering me good control.
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