TRIPLE POSITIVE GROUP

LTWJ

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 :

SpecialK

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.

Jumpship

My very thick hair came in slowly and thin. Extra thin in the male patterned baldness area. Dermatologist recommended Ducray shampoo and that's made the me area similar to the rest of the thin hair so I'm happy. Wish it was thick again but no chance of that. At least I feel normal again. Old...but my hair looks normal

shelabela

Vicky, i am leaning towards "gummy bear " implants. My PS said they look and feel very real. He will also reconstruct my nipples.

coachvicky

shelabela

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

BJI

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.

shelabela

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.

deni1661

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.

deni1661

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.

Any input?

ElaineTherese

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.

LTWJ

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

kae_md99

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

ElaineTherese

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.

deni1661

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.

meg2016

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.

deni1661

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!

alwaysbepositive

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

SpecialK

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.

deni1661

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.

Taco1946

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

deni1661

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 insomnia

shelabela

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

FaithHopeLove84

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?

kae_md99

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)

SpecialK

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.

kae_md99

Thanks Special K, i have one more question, my hands swell although not very prominent.. i wear the sleeves and the gauntlet almost everyday now especially that it is getting hotter.plus it is very tedious taking them off, only to wear them when i cook, wash the dishes, etc.. The PT at the LE class i attended told me that the body will sort off regulate itself once chemo, surgery, etc are done and hopefully the lymphatic system will, too... i certainly do not want to wear the sleeves on a regular basis but ,although not swollen all the time, my hand feel heavy..any thoughts on this? i go to a licensed oncology massage therapist for drainage but she is very expensive .now, i am waiting for auth so my PT can drain me while continuing therapy for frozen shoulders ... did not expect this LE, i only have one node removed from the right and 2 from the left

SpecialK

kae - my lymphedema started in the middle of chemo - I had a body-wide swelling event, most likely an allergic reaction that occurred days after infusion. Not sure about the body regulating - I have had some of my worst flares years after chemo, including one a year ago - and that would be 6 years after last chemo. I am less versed in hand swelling - have you asked the ladies on the LE threads? My worst swelling is in the bicep and the underside of the forearm, but my hands have been ok. Does your arm swell?

alwaysbepositive

Thx everyone for the welcomes and advice! I will definitely look into the essential oils and try some Melatonin, not really wanting to take anything too strong. Hell, we take sooo much crap as it is, don't want to add another pill if I don't have to. Ha. Plus my mom was on Ambien when my dad passed from Melanoma and it made her do crazy things! Staying away from that one

Ingerp

Ladies--I could use your input. (First--quick shout-out to all of you I've exchanged PMs with. Being me I had to do hours and hours and hours of research before coming around to a treatment plan. I value the information and kind words you provided. In the end, I'm going with exactly what the MO suggested, but I had to do my due diligence.)

So--I'll be starting the same regimen many of you have been/are on--Taxol x 12, with Herceptin for a year, but here's my issue. My youngest is graduating from college in a few weeks. It'll be the first time my whole family will be together since last summer (and also not sure when this will happen next--damn these kids growing up and becoming independent!!). I'll probably have my first infusion the day after I get back. What/when do I tell my kids? I was a little surprised that they didn't ask more questions two years ago, but (1) they are all boys and (2) I think on the list of their mother's body parts they'd just as soon not think about, breasts are pretty high. I don't want to cast a pall on the graduation weekend--we've all been *so* excited about this trip. I've considered not saying anything until afterwards ("Hey guys--BTW I started a little treatment last week") but that doesn't feel right. But I know I don't have to tell you "chemo" is such a scary word.

Thoughts?

coachvicky

FaithHopeLove ... It takes time. Go slow to go fast. Three months is a short time on this journey. Keep stretching and exercising (and hydrate as SpecialK reminds us lovingly). I bet in the next three months you will feel different.

Ingerp ... I don't know. I offer these:

If the roles were reversed, how would you want them (one of your adult children) to tell you?

Remember, you can withhold and not tell. It is your journey.

Vicky