January 2016 Chemo!

LoveMyVizsla

Wow, Frill. I've never heard of a lymph bypass or transfer. How does the transfer work? I have to go look up cellulitis.

Frill

LoveMyVizsla: For the bypass transfer, they figure out which lymph vessels are block, then connect those vessels to blood vessels, so that the veins do the work of the messed of lymph vessels, veins (?). For the transfer, which is done about 6 months later. Two lymph nodes are taken from the groin. He said they are about to locate the sentinel node now and not harvest it. The lymph nodes are put in place and according to the dr, actually spread and grow new pathways.

And if you've had a chance to look up cellulitis, it sucks. : / I've already had it 4-5 times in less than a year.

Paxton29

Frill, you have been through so much! I am hoping you can get to a point where you can stay out of the darn hospital for a while. Your attitude is pretty amazing considering all you've been through ... at least you can still laugh about some things!

Has anyone heard from our thread starter Miss Bee? I hope she's doing well.

DFWFLYGIRL

Hey Frill...so sorry you are going thru such ongoing health issues. The recovery or return to normal is not an easy task for anyone but harder when you have compounding health issues. Healing vibes coming your way....

Paxton.....I sent Miss Bee a note but have not heard back. Hope she is busy and doing great!

Citrinetiff

I finished my chemo in July and my rads in September. I now found a new pea shaped lump in my lumpectomy scar. Has anyone experienced this? I am terrified that it is a recurrence. I am seeing my BS tomorrow, and I am hoping that it is just new scar tissue. Since we all started chemo in January, I am hoping you could give me some insight. At least I am hoping you can, cuz I am freaking out.

Frill

Well, I'm officially going to change MOs. I have no clue how to do it, so I called the patient advocate. I guess when she has a chance, she'll call me back.

He told me today that 1) my period stopping when I got the Mirena IUD had nothing to do with the IUD, it was menopause. The Mirena website would disagree however, as it says, "After your body has adjusted, your periods may become shorter and lighter, may remain irregular, or may stop altogether." This is even though I never missed a period until I got an IUD, and never had a hot flash, never had any symptom of menopause. I know I've said this before. It's like he refuses to state the extreme obvious - that FAC fucked me up, and he refuses to address any of it. I

2) Women without ovarian function can't have orgasms. I was informed of that side effect because I was told of the potential to "lose ovarian function" and that is the same as telling me, "There's a big chance you won't be able to come after this."

And my boyfriend says I just need to be grateful to be alive. Oh, and it just may be in my head. But I took that wrong when he said it.

Gee, I'm sorry that the loss of his sex life is so important to me. Because if I can't, then he's not getting anything out of me.

And my MO was just like - If you're not going to take Tamoxifen (why would I were post menopausal, but w/e), then I guess we're done here. Soooooo, he's saying that there's no follow up visits, no nothing, if I won't swallow his pills? Because that's pretty much what I heard. t.

I just need to go put my gratitude hat on and get my attitude right

Smurfette26

Oh Frill you're adorable and your attitude is just right. You are advocating for yourself. There's nothing wrong with that.

Thank you so much for sharing all that you are learning. So many of us are struggling with sexual dysfunction and it is a HUGE deal.

Sending hugs. Donna.

Paxton29

What? No ovarian function means no orgasms? Or am I confused. Luckily I've found things to be ok now but during chemo things were certainly dry and uncomfortable.

Citrinetiff, I just today noticed what seems like a raised spot, not really a lump I guess, but something not smooth at the end of the scar over my implant on the right, more so than on the left. I am guessing/hoping it is no big deal since I am only four weeks out from surgery but will ask my PS when I see him in two weeks. It is ALWAYS something.

Let us know what you hear!

Frill

Paxton, that is exactly what that man said to me. It was the most patriarchal, male whatever baloney I have experienced since I knew better and knew how to say screw that, screw him, I want another dr. During Taxol everything was fine - dry, but functioning. Once FAC kicked in, it stopped.

Smurfette: You make me happy just seeing you. I told my bf - you complain about this and you'd get viagra. I complain about it and I get, "It's in my head" and "I need to be grateful for what I have."

I'm taking my ungrateful, need to be happy with what I have (left) butt to bed. (lol)

Valstim52

So according to your MO us posmenopausal gals can't have an orgasm? Well he is really sooo wrong. I have no ovary function to note, as I've been done with menopause and I have plenty of orgasms. What a dope!!! So sorry for you Frill to have to deal with this on top of everything else

Myraknits

For Real!?We have enough to deal with already without this type of bogus info going around. Here and happy to report, fully post menopausal and completely orgasmic. Now dryness is a different issue but I'm going to an apt to find out about Mona Lisa Touch on Monday.

LovesToFly

Hi frill. my period stopped on Mirena, I had two cycles before I started FEC, which also stopped It.

Also, your doctor was wrong. I'm having shots to stop my ovary function, and although we now use lube, I still orgasm. I have heard sexual issues can be a side effect...but it is not a given

Good luck getting moved to a better MO!

Maya15

Frill, I agree with everyone else. AC brought on immediate menopause for me. I've needed lube since Taxol, but no problem with orgasms.

zinny

Frill, I think we should start a snail mail ( his speed) landslide to the man telling him all about how many orgasms we are all having without ovarian function! What an idiot. He may be good at cancer, but it sounds like he is not good at the rest of medicine!

LovesToFly

Recently tested...haven't had period since I was on FEC in march, have been on Zoladex for 2 months, orgasms still working :

Frill

Thank you all for the support. It really means a lot, especially when I keep hearing that it's not a big deal or I'm making too much out of it. Or the best one, "be grateful you're alive." So thank you, thank you, thank you.

I got my reassignment to a new MO immediately. Except that - my one request was to be assigned to a certain doctor, and if I couldn't be with her, I wanted a woman MO. My new MO is a man. The patient advocate said she would get it fixed on Monday.

I also went to see my regular gynecologist. She looked at my estrogen numbers and said my ovaries were shut down, but since we didn't have a pre-chemo number it was hard to tell if it had already happened before chemo because of the IUD. She agreed that the IUD stopped my periods, it was the best SE of getting one. She said that it was probably caused by chemo, but that it was pretty unusual that I didn't have any menopausal symptoms (other than dryness, but that had sort of been coming on little by little). She asked a lot of questions about the orgasm issue. Then she said the Estring would be her first step, but she needed permission from my MO first. *ugh* But still, unlike the MO, she said it could help. She said jumping straight to birth control pills was just not what she would go with.

I think one of the best things she said was to take a breath, and just give my body a chance to come back from all of this. Just like my hair fell out, but started to come back, then fell out again, and now is growing, like my fingernails, body hair, . . . it's little by little. That I can live with, I can understand.

With all this lube talk, I thought I'd give a quick plug to coconut oil as the best in the world. Besides that it's all natural, it's also sort of solid, so I can make a little ball of it, put it in when I'm getting ready to go to bed, and everything is ready to go even if we have sex in the morning. Then there's not that whole, grab the lube, squirting it, being lube covered afterwards. Plus, using it every day is supposed to be really good for the vagina. I'm doing it now, even though I'm away from DBF during rads.

Cathytoo

Frill...good idea about coconut oil.

LovesToFly

I will try the coconut oil. What I've been doing instead is popping up a vitamin e capsule a few times a week, but not when I'm expecting to have sex because I have heard that it can break down condoms. I think it's pretty unlikely for me to get pregnant when I am on Zoladex and have not had my period since March, but I've been told that I have to use birth control and I am scared not to. Anyway the vitamin EE does seem to keep things more moisturized and The skin seems to be less delicate and does not hurt (when I wipe after peeing) as it did at the beginning of the zoladex.

Good luck with the new MO Frill, I hope it's a great match!

Myraknits

Unfortunately I'm past the lube stage. Pretty atrophied so tomorrow I'm going to an appt to find out about Mona Lisa Touch. I read about it here on the boards. I'll let you all know what happens. Would be nice to get things fully functional without any pain again.

Frill, sounds like you're in good hands now. I'm so glad. Yep, it's been one step forward, 3 back with some stuff but 5 months post chemo I really am starting to feel more like my old self... I even have eyelashes!

LovesToFly

i'm curious to hear what you learn about Mona Lisa touch, I don't know much about it,I don't think I need it but I will be changing to an AI eventually so who knows?

I will say that even though I do not have orgasm issues, and lubrication issues are manageable, my libido has gone down. We are averaging once every 2 to 2 1/2 weeks, where it used to be once or twice a week. Still I am OK with that, I wouldn't want to be never interested in sex though

On a personal note, my husband and I are going to Cuba to an all-inclusive in the middle of November. We have two kids who are seven and 13 and we have never gone away without them, I'm so excited for this trip even though I will miss them… And hoping it will help us we connect after this ordeal. I wouldn't say were having marital issues, but as you all know it's stressful to go through this and that impacts everything.

Frill

Myraknits: I'm curious as heck about the Mona Lisa touch. I've read about it here, too, but not from any doctor at my fancy pants hospital. So frustrating. They should have it in the gyn onc dept IMHO. Please keep us posted as to what you decide, if it works, etc.

Myraknits

Frill and Jill, (hey, that rhymes!) . I'm happy to discuss it with you all. These are incredibly important issues and most drs really want to avoid talking about it. Our quality of life includes sexuality. There's no reason to pretend it doesn't matter!

Jill, Cuba sounds fantastic! Can't wait to see pix and hear all about it.

LoveMyVizsla

There was a whole section in my chemo manual about sexual dysfunction, but I never read it. Maybe I should, because I am having the dryness issue too. Like the Sahara.

zinny

Hmmm. Thanks for you ladies. My sex drive has been pretty low, and my DH is afraid of my scars... When we finally did get our "windows" synchronized recently, sex was super uncomfortable even with loads of lube. I just thought ( hoped) it was a one-off, but now all of the sudden I am realizing there may be more to this than that. Mona Lisa Touch looks interesting. This is not ok as our new normal!

Myraknits

OKAY! Very interesting development on the Mona Lisa front... He said 70% of all women who have chemo and take AIs have some level of vaginal atrophy. Apparently between chemo and menopause I'm pretty well atrophied so I'm a good candidate. I will get 3 sessions spaced 6 weeks apart. First one is this Wed. It's definitely pricey but will be totally worth it if it does all he says it does. We also bitched about how it's not covered by insurance because women's sexual health isn't an issue insurance companies think is necessary. I like this Dr. I'll let you know what happens....

LoveMyVizsla

I'm not taking an AI, so I can't blame that for dryness.

Frill

Today I see a dr that specializes in sexual dysfunction. Out of pocket, but I really want to hear what she has to say.

Myraknits: I'm really curious about the procedure. I looked it up in Houston, and there aren't as many drs as I would have thought who are offering it. I don't want to just have anyone messing around down there, lol.

Jill: I've had low libido before. It sucks. I don't so much right now, but then again, DBF and I are 4 hours apart. I hope you have tons of fun in Cuba. It sounds like a wonderful getaway!

FLBuckeye93

Did you all hear about the highly effective male contraceptive that they stopped during the trial period because the men were getting acne, depression, weight gain, etc. Welcome to our world!

Frill, thank you for the info regarding MD Anderson. I'm sorry for all of the crap you're dealing with. I can attest to still having orgasms. I had a hysterectomy and things work fine except I'm dry.

Myraknits, I can't wait to hear about Mona Lisa's touch. I've been considering it because I don't want to use estrace, but it seems to be the only thing that works. Of course, it isn't covered by insurance. Sheesh. You'd think it would be because it benefits men.

However, I haven't tried coconut oil the way it was suggested. Is it a pea sized ball or a bit bigger that you use? And it doesn't cause any infections?

I saw my MO this week. He's switching me to Aromasin because he's concerned about the LCIS that has formed while I was on chemo and then taking Arimidex. I'm now on it for ten years instead of five. 🙄

I asked the MO for his opinion regarding a prophylactic mastectomy. He commented on the complications of surgery. He suggested I wait and then do surgery if it comes back because they'll catch it early. Makes perfect sense....don't do surgery now while you're healthy and cancer free. Do it when we find the cancer and add chemo to the mix. As if chemo doesn't have serious complications! I love my doctors, but why don't they see the craziness of this?

I'm consulting with two plastic surgeons over the next few weeks to see about reconstruction. Apparently, it's more complicated due to rads on my left breast. Sigh.

And the beat goes on.

Smurfette26

My Daughter told me about the male contraceptive "saga". Wimps. LOL.

I have used Organic Virgin Coconut Oil internally and externally for over 12 months and have never had an infection.

Valstim52

Hope this isn't a dumb question, but Smurfette how much do you use internally? a tsp?