Starting chemotherapy March 2017

moodyblues

SoxFan, thank you for the encouragement!  I have only been on this site as I knew Dr. Google is too full of misleading/incorrect and false information.  I feel that this site has helped me to be informed and educated on my type of cancer AND has led to me realizing I am not alone....there are many cheering me on here genuinely!  Her2 sucks!

MommyErin

SoxFan, I hope you're feeling better!

Thinking about all you ladies today! Stay strong and healthy! xo

Tara17

soxfan --not glad that the fog ended up beign neutropenic fever, but glad that you advocated for yoruself to get counts checked and got yourself the proper care --sounds like you are on the mend and i am hoping you are home from the hosoital. Sounds like they will need to give you neulasta or neupogen with proactive monitoring of the counts for the next cycle ? Keep us posted. And take care

Mqara --sorry that it has been frustrating for you ---hang in there, we are thinking of you . The hari loss is indeed disappointing after you have done so much work, but the work uou have done may yet pay off with quicker hair growth afterwards . This too shall pass

Just finished my 8th treatment today

Tara17

moody blues ---i dont feel that her2 sucks actually --that was true in the pre herceptin era but in the modern era of herpcetin, i am grateful for herceptin a targeted treatment

indeed, Barbara Bradford one of the brave ladies who was one of the ladies on the original herpcetin phase 1 trials, one of the first human being into whom this drug was infused , had stage IV disease with lots of disease and lumps ---she recd herpcetin in the 1990s and today 25 years later she is NED after a stage IV disease diagnosis with heavy disease burden. So her 2 offers a target and herceptin is our lifeline . My onc too has patients she has taken care of from the 1990s with stage III disease with lots of positive nodes and stage IV ladies who are still going strong !

Of course we would all much rather not be in this place, but in this place we are and forward and through this we must go -- so i am grateful to have tools and resources to attack this disease, grateful to have insurance and live in a country where we have access to herceptin

Tara17

mommy Erin -- i see you mention liver in your signature, hoping and praying that everything melts away and stayed melted with herpcetin and perjeta!

Lordhelpmetoo

Tara,

Glad you finished your 8 th treatment today. What follows? Hoping for minimal SEs

Tara17

Hi lord help me too --thx for your good wishes re SEs ! I have four more weekly treatments and then mastectomy. I am fearing the mastectomy ---- scared of the drains, pain , recovery time ; fearful of waking up and seeing a flat gash where a breast used to me--i cry when i think of this.

and am hoping that the anticipation is worse than the actual event

wondering how i will feel as a woman, and its impact on my personal life, whether the reconstruction with implant will look cosmetically ok , how I will adjust to looking in the mirror , how i will adjust to not having any sensation in the reconstruction.

If anyone on the board can share anything about how they felt about the above with mastectomy , i will be most grateful

What's next for you lordhelp me too?

Lordhelpmetoo

Tara 17,

You're having same feelings as me. I'm having my BMX next month. It's a scary step, but I figure chemo is worst.

Tara17

lord help me too, we will go through our surgical experience together too then, after chemo with each other's help and the support from this group . Hope you are resting well and relishing in the fact that you have done a great job getting through chemo

kimburke

Hi Tara17 & Lordhelpmetoo,

Mastectomy, doing the surgery is the easy part. Tara17, The anticipation is worse than the actual event .

After surgery, there was minimal pain from the cut but i experienced discomfort and because of the drain, had to sleep on my back for the first few weeks. This was uncomfortable. However, i have seen some people state that they sleep in a recliner/lazy boy chair, as its more comfortable. I needed help to do basic things like take a shower and get dressed for the first two to three weeks. Try to wear clothes that button up in the front, so you wont have to lift your hands too high to get dressed.

I am still healing now, three months after. I still need to do exercise and stretches as the area gets very tight and tender. Externally , its healed nicely. There is still some numbness in the area, but some of the sensation has come back for me .

It took me a few days to be able to look at myself and again, in the mirror at my chest missing one breast. It messes with your mind, being a woman" with only one breast" but its an adjustment again, like when we lost hair and then it didn't seem so bad. I wear bras with a prosthetic and am just careful to choose tops or dresses that are not cut too low , to show my missing breast. I don't know what to do in regards to the beach yet though. lololol.

I haven't decided on date for reconstructive as yet, and I am looking for a period of normalcy for now as I am tired of doctors, chemo and post surgery discomfort right about now.

MommyErin

How are you feeling, Tara? Thanking about you!

Like you, I am so incredibly grateful that I'm Her2+ and that herceptin and perjeta exist! They are total game changers!

Thank you for the prayers. I do have possible metastasis to the liver (two small spots lit up on the Pet, but haven't been confirmed with biopsy yet). I have a liver MRI and biopsy on Friday (if they find anything with the MRI). If they find nothing, it could mean no metastasis or, since I'm already two treatments in, that treatment is working. I will likely be on herceptin forever and perjeta as long as I can't tolerate. But if they keep the cancer away, I am totally fine with that!

Regarding feelings about surgery and losing my breasts, I had planned to have a prophylactic mastectomy before age 35 because I'm BRCA1+, but cancer got me first (happy 31st birthday, literally). So, I was crushed when I found out I couldn't get the skin sparing mastectomy I was planning on due to probably needing rads. And now with my possible Stage IV diagnosis and a mastectomy possibly off the table, I find myself wishing and hoping for that flat chest mastectomy and rads since I'll get it if it turns out I'm not stage 4 or if the liver mets are gone! It's funny how our minds work and priorities and concerns shift with changing circumstances. I'm sure when/if mastectomy is back on the table I will share those concerns. I know I will grieve the loss of my breasts and share your concerns regarding appearance, feeling, etc. I think it probably just takes time. Anecdotally, my mom's friend who had BC 20+ years ago is all excited about this 3D nipple tatoo artist in NOLA and is planning to have hers redone. She's made her peace with losing her breasts and now they're just an accessory. I know we all will make peace with the loss eventually, but it still sucks! Hugs

kimburke

It's day 5 and I am feeling extra tired this time around, ladies, So I have been resting more. I am sleeping more, or just not up to doing too much . The bone pain seems to be more pronounced this time as well , still manageable but I am aware its here. The sense of taste is slowly coming back now. The headache is gone , for now.

Prue_Pueng , I am on the same schedule and dates as you are. I understand about the hair and hope you are better with it. Hope you are doing good and looking forward to the last treatment.

Lordhelpmetoo- How are you feeling after the final chemo? Were the side effects easier to handle?

Tara17- how was treatment today?

Soxfan75

I'm feeling a million times better today and hopefully this lasts right through until the next chemo infusion on May 4th.

Tara17 - I had a bilateral mastectomy on February 7th. On one side I was able to do a skin sparing mastectomy, but not on the other side. For me, to wake up and look in the mirror in the aftermath, seeing a nipple on one side somehow seems to make things easier. I never cried when I looked in the mirror because a.) I never attached my femininity to my breasts, and b.) I knew at the end of all of this I would be getting an upgrade after 42 years and two kids. I'm sure it's different for everyone.

Are you doing tissue expanders first or immediate reconstruction? I have tissue expanders and when they put them in initially, there was some fluid in them so I never was entirely flat. I was always small chested before so it wasn't as much of a shock. It's funny because one side currently has 450 cc's of fluid and the other has 280 cc's of fluid, but they don't look uneven when my shirt's on. It's taking a while to get the skin sparing side filled because the skin was scraped so thin I had to wait for it to heal. I have an appointment next week so hopefully my PS will be able to add at least 100 cc's to it before my next chemo tx.

I imagine the type of mastectomy and reconstruction option you end up having ultimately affects the pain. I can only speak about a mastectomy with tissue expander placement. If this is what you're having, you'll probably feel a lot of chest pressure after surgery because they put the expanders under the pectoral muscles. I don't recommend laying down (even partially propped up) unless someone is there to help you up. I like to think I'm in pretty good shape and getting myself out of bed was the most painful for me. I slept practically sitting up for a good two to three weeks.

The drains are a pain. You won't be able to shower until they come out and that could be up to two weeks, so be prepared for that. I didn't want to lean into the sink to wash my hair so I went to my salon every three days and had my stylist wash it. My surgery was pre-chemo so I'm not sure if that will be an issue for you.

I look at the scarring and get a little down wondering if it will be less noticeable. The physician assistant (a BC survivor) at my plastic surgeon's office showed me her reconstructed breasts a couple of weeks ago and it made me feel so much better. I'm sure the scarring will fade.

If you're doing tissue expanders, I'm not sure what bra size you'll be going up to, but don't waste a ton of money on special bras because as you get "expanded" you may have to change bra sizes. I found these $5 Fruit of the Loom bras at Walmart that were extremely comfortable. They have pockets with removable pads. I also found (at Walmart) these water-filled push up pads that I bought in two sizes, B/C and C/D. They were $7 for each set and fit nicely into the bras. I found those extremely helpful in adding volume to my somewhat flat chest. As I got fluid added, to one side and not the other, I just used the bigger pad on one side and the smaller pad on the other to even them out. They were fantastic and so much cheaper than the $50 inserts you see on some mastectomy product websites. I believe they also have silicone push up pads but I didn't find those to look as natural.

Unfortunately, I won't be able to have my final reconstruction for several months because once I'm finished my chemo (July 6th), I'll have to follow it with 6 weeks of radiation and then wait 6 months after the final radiation for my skin to heal before they'll swap them out for silicone. Hopefully by this time next year I'll have my permanent ones.

I hope some of this information helps. We all know that none of this process is easy, but they've really come a long way to helping make women feel whole again.

Lordhelpmetoo

Tara17,

Yes, definitely we will support each other through this journey along the other ladies on this board. Today just resting up, as fatigue has settled in.

Soxfan75

MommyErin- Your mom's friend hit the nail on the head when she referred to it as an accessory. It's funny...on my skin sparing side, I still have my nipple so it still feels like it's mine. The other side feels more like an attachment. It's just there. If a female friend wanted to see what it looked like, I'd have no problem showing her the regular mastectomy side, but would be far more shy about whipping out the other side because visually it's still me. Weird, I know, but does that make sense?

Lordhelpmetoo

soxfan75,

Thank you so much for giving us all this info regarding your masectomy. It really helps us preparing for it. I'm glad your PA decided to show you her surgery scars. It's definitely uplifting seeing a bc survivor thriving

MommyErin

Soxfan75,

So glad to hear you're feeling better! Thank you for all the mastectomy information. So helpful! Are you only getting radiation on the non-skin-sparing side or both?

And that totally makes sense regarding the nipple and no-nipple side. My mom's friend apparently has no issue showing her breasts to friends, women or men, if they're curious. It's a total mental shift from a private body part to a piece of work done by a surgeon, tattoo artist, etc. I have also been trying to think about it as an "upgrade" after breastfeeding two kiddos. ;-)

Soxfan75

MommyErin - Radiation will only be to the non-skin-sparing side. There was no cancer on the skin-sparing side, but I opted to get rid of it because this process is taking a year out of my life and I will do everything in my power to ensure it doesn't steal any more time from me down the road.

Prue_pueng

Kimburke - how are you? Has the bone pain and fatigue gone?

I am having 6 cycles of chemo. So, it's already half way. It's funny that chemo works with each one differently, my sense of taste is gone during day 6 to 10.

I'm now happy with my bald head. It's much easier to wear a wig and no more hair cleaning lol. I will have my wig trim and styling to make it more like mesoon.

MommyErin

Thanks, Soxfan75. I am planning to get a double as well even though the cancer is only n one side. My surgeon hasn't mentioned the option of doing the other side skin-sparing though, so I'll have to ask her about it.

kimburke

Prue_pueng,- I am doing better. Still tired, but trying to kick it aside and start being functional again. The bone pain is subsiding now and more tolerable. Taste buds are back now and the appetite.

Soxfan75- lots of details in the reconstructive path. Thanks for the insight. I haven't decided when to tackle the reconstructive surgery as yet. I want to feel normal for a while first, but then I want to get it done and over with and have no "to-do list" anymore.

MommyErin- 31 and stage IV. Thats a lot. I hope the liver biopsy on Friday comes back clear. Keep us posted. Yes, the mind is a powerful thing. Helps us cope with all the changes that life brings us and how to deal with them.

kimburke

Lordhelpmetoo- How are you doing now chemo is over? Have you scheduled surgery as yet?

Lordhelpmetoo

kimburke, glad the fatigue is subsiding and that tastebuds and apetite are back. I still have a nasty taste in my mouth

MommyErin

Well, I'm officially in stage IV limbo. Radiologist couldn't find any spots with MRI, ultrasound, or CT, so no biopsy today. So, either the spots on my PET weren't cancer or the tumors are gone/microscopic. I would have liked confirmation one way or the other, but I'll take this as good news in that either I'm not stage IV or treatment is working

Tara17

mommyerin ! That is awesome that there were no spots to biopsy --yay! I was thinking about you as we knew you were going to have your biopsy yesterday. I am so happy that the radiologist couldnt find anything to even biopsy and it was all normal . I can understand the limbo feeling and that it would have been nice to have some conformation one way or another. ....but the lack of spots now is good news! We definitely didnt want to see any spots while you are actively getting herceptin and perjeta. Are they gong to repeat a PET scan by any chance ?

Tara17

soxfan75 --i cannot thank you enough for the detailed step by step description of the surgery process! This is so incredibly helpful . I will be having tissue expander and at this time, will plan to do unilateral mastectomy. I dont feel physically ready to take on both arms being out of commission at this time and i am still recovering from the cording process on the left side . So unilateral for now, complete a year of herceptin and then decide about the other side . Shall buy the bras as you suggest .have lost all my hair with chemo, so washing my hair wont be an issue .

.wish i knew how to pin your post as it is so so helpful for anyoneundergoing surgery . Thank you again so much!!

Hope your chemo is going well? Are the counts holding up? Did they decide to give you neulasta or neupgeon going forwards ?

Tara17

kimburke --sounds like you are doing better on many fronts --happy to hear! How is the arm?did you end up going to the physio therapist ? How's the darkness of the nails doing ? Hope you are continuing to stay hydrated with the hot and humid weather in jamaica .

Lord help me too --hope you are cotinuing to recover from chemo , do you have a surgery date yet?

Prue pueng -how is th weather in Thailand right now ? Glad you are doing well with the hair loss and what a great feeling to be halfway done with chemo! Keep us posted on your cycles and how you are doing .

I am off for week # 9 of taxol and herceptin on monday . Chemo fatigue just hit me this week and i cant wait to be done! A bit nervous abotu surgery but i think thats normal and again , soxfan 75 post is so helpful regardign surgery .

A good weekend to all. Again, Happy to hear mommyerin had no spots on liver and wish to continue to hear good news regardign moving forwards and onwards from all you ladies !

Hugs to all

Tara

MommyErin

Tara17- I'll be thinking about you Monday! Hope you're having a relaxing and enjoyable weekend before treatment! I'll have another PET sometime after treatment #3 (which is Thursday), so in the next two or three weeks.

dlk53

I have not started chemo yet. I am still trying to figure out if I should do it. My oncotype dx score was 22. When I read over the report, it says my 10-year risk of distant recurrence is 14% with Tam alone but with chemo it only improves to 12%. That's only a 2% difference. I'm afraid of what damage the chemo can do to the body for just an improvement of 2%. I've also read that the Taxotere can cause permanent hair loss. I'm just so confused!

Lordhelpmetoo

Tara, thank you so much for always getting back to us with your kind words. My surgery date is may 25th