Starting Chemo March 2015

slothabouttown

Theresa,

You're lucky that your doctors seem to understand that the continued monitoring serves two purposes- to catch any recurrences early and to give you peace of mind. It sounds like a lot of doctors are content to do zero monitoring absent any symptoms. And in my experience anything I mention as a symptom is swept under the rug by my MO. I feel like at the least our doctors should understand the psychology of this disease and its treatment and be sensitive to the rabbit holes and dark thoughts we are all fighting with after chemo and rads instead of rushing us out the door after treatment with a wave and a ,"see you next year."

Allison, I had the numb thigh after my second mx. Docs didn't have an explanation for it, I was sure it was a blood clot, and when I googled it, turned out its common after surgery- some type of nerve damage from the leg's positioning on the table during lengthy anesthesia. I had that numbness for a couple of months on the outside of my right thigh. My IV was in my foot for that surgery and so I didn't get one of the compression machines on that leg, that's why I figured I had a massive blood clot. Remember that "worst case scenario" book? That's me these days. .

Italychick

sloth, my MO did tell me she won't do any monitoring, other than the heart scans for Herceptin. But my breast doctor is intuitive and she gets testing approved for me. I also have a primary care doctor that will prescribe whatever I feel necessary. And so far, insurance has paid. If they don't, I know what everything costs out of pocket, and I will do what is necessary, maybe foregoing some of my trips to Italy!

My breast doctor is of the belief that the sooner things are caught, the better the chance for successful treatment. I can't believe other doctors don't think the same way! Initially I was afraid of testing, but now I recognize the value of it. Find anything, deal with it quick.

IndyGal35

Wow, Whitney. I just finished reading your essay. I hate that you had to face such an awful ultimatum, but I found comfort in your words. I'm 35 and married, but I've struggled with many of your thoughts too. We always thought we still had plenty of time left to have children if we wanted. Having that decision yanked out of our hands has actually been very mentally tough. I feel guilty for waiting so long. I couldn't have predicted cancer, but I see the baby bump posts on my Facebook feed and feel very cheated

Thank you for sharing your words. Sometimes, there is comfort in unity.

slothabouttown

Lee, tomorrow the bracelet will be heading to Indiana! It's been so meaningful to have these past couple of weeks, knowing it's made its way through so many of your hands and will continue to travel and bring the spirit of the March chemo group full circle.

All the charms are meaningful and many remind me of the struggles we faced through chemo and the collective humor we threw at all our nasty SEs.

Since I work in the animal welfare world I thought I'd take the opportunity to pay homage to our furry mascots Jack and Tutti. Thanks to Katy who shared them with us-they brought us joy and comfort, as did all our four legged companions who seemed to understand that snuggling was their most important job this spring. They stayed by our sides through it all.

Jackbirdie

Tears. Sniff... Thanks Sloth. You definitely held that humor torch and ran with it for all of us when we just couldn't laugh ourselves..

Love the charms.

DavisD

I haven't been on this thread in so long but it was nice to read the past 24 hrs and see you ladies have held it together.

I won't go into too many details but I finished chemo and have about 6 more rads. My skin in burned badly and I've bordered on saying "screw it" and stopping the torture...then I think of my kids and how I need to do anything possible to avoid recurrence. I get Herceptin infusions every 3 wks and though I hate that chemo room, the infusions aren't bad. I just started getting a little dusting of hair...thought it would never happen but grateful! Has anyone else had a lot of pain from rads? My skin is beet red all the way to under my arm...it makes me nauseous to think about going back in for more this week but I'll give it my best.

Like avmom I think I'm doing worse emotionally now even though I recognize I'm not as tired and no more GI distress...I appreciate the sharing, it makes me feel less alone.

Jackbirdie

So good to see you Diane. But so sorry about the pain, the burning, and the emotional difficulty. It is such a long, long treatment duration. I can't blame you for feeling and thinking what you do. I'm so glad you reached out, I never stop thinking of you. Sending mojo.

KBeee

Diane? I am sorry rads is burning you so badly, Yikes! I dread that in a few weeks and know Iam heading down that road. How is your reconstruction holding up? I worry about that too.

Awesome charms! I have not put my name on the list because I can never wear a bracelet of any sort at work... And I work all the time!

jumbledbamboo

Well, my mom got shitty with my husband and he called her on it. She started crying. So I of course felt bad even though my husband was right. She left today. It's ok my husband is here to take care of me. She was going to stay longer but its better she left. She doesn't know how to help. I can't give orders to my mom onwhat to do and she didn't know what to do to help.

I had one genetic marker that is possible for ovarian cancer. That is how it was worded to me. However, there were no other genetic reasons. Just being triple positive and discussing it with my doc. I also had the VAD stroke. I just want to get this all done in one year.

Thanks everyone for the sweet thoughts . IRL I lift everyone up and now here I am the downer. Ugh. I will be better soon

Jackbirdie

Jumbled- we all go up and down. It's ok. Our sistas family is big enough and strong enough that someone is always up when someone else is down. And nobody is keeping track. Sorry about the drama. Hope it gets better now that it is simpler.

Trvler

Anyone taking antidepressants? I think I might need some. It said on my packet that it was typical after this surgery. Any ones you like or don't like and why?

Jackbirdie

Allison- first, sorry you're depressed but so smart of you to deal with it and reach out. Since you are young and ER + I am thinking your next stop on the shit tour might be Tamoxifen? If so, there are many anti- depressants, good ones, that interfere with the metabolism of Tamox and you should start by scratching those off the list. The doc prescribing might not be aware. One I know you SHOULD NOT take if on Tamox is Wellbutrin. There are others. You can easily search on it, sorry I don't have a link handy.

Also, keep in mind that anti depressants work different for everyone. What works well for one person may not work at all for another. Trial and error is the only way I've ever done it. It's frustrating but you get there.

One other thing. It has been shown that depression is best treated with a combo of meds and talk therapy. I think you mentioned before you have access to a cancer therapist? I would start there and let her refer you to a good psychopharmacologist. If he or she deals with cancer patients they'll be familiar with which meds font play nice with Tamox.

Jackbirdie

Leigh- are you out there? You've been much on my mind since you finished chemo. I hope the last infusion is tempered by the knowledge that it is finished now, even if your body didn't get the memo.

And my super duper mojo calendar has your name on it for .......

DEPORTATION TOMORROW!!!!!!

Yay! 🎉🎉🎉🎉🎉🎈🎈🎈🎉🎉💃🏿💃🏿💃🏿💃🏿🎉🎉🎈🎉💃🏿💃🏿💃🏿💃🏿💃🏿🔔🔔🔔. Doing the happy dance with you. Go slow. But that is when I really started feeling better. Something sbout hosting foreign objects doesn't agree with me.

DavisD

Kbeee-I had a skin sparing nipple sparing mastectomy in 2011. The BC came back around the incision site of that surgery.. I'm not sure but I'm wondering if the burn is so bad because the outer skin is pretty thin...I don't know but I haven't heard many people having this reaction. The first two weeks were a piece of cake and I thought I was getting off easy! Now I just don't feel confident to understand what the possible cosequences of stopping early might be so I'm gonna give it my best. Good luck to you. I forgot what kind of reconstruction you had?

Hi Katy, Theresa, Allison and Whitney!! I can't remember anyone elses real names.

Have a great Tuesday!

Italychick

Hi Diane glad to hear from you but sorry for the circumstances. I hope things get better. You have had a tough time of it

Meme117

Hi all! Hope everyone enjoyed this holiday weekend. Hugs to those who need it!!!

Whitney it's cheesy but I know the love of your life will appear when you least expect him and when the time comes you'll know about having a child or not. Just keep enjoying life even thru all this crap...

Diane nice to see you, sorry about the boob burn. What cream(s) are you using? I'm planning to follow a cream regiment that was listed by someone who had no burns, the list of creams is crazy. I figure I bought all the prep stuff for chemo and I might as well buy all the creams for rads, just received my emu oil.

Sloth the charms are too cute.

Carrie37

I can't wait to get the charm bracelet! I have a charm in mind to add and I'm so excited!

Diane, I had nipple and skin sparing on 8-20-15. They told me that rads might be tough because my skin is so thin.

Allison, I take Wellbutrin and have for several years. I tried a few other anti depressants before settling with this one. I am pre menopausal so I should be starting Tamoxifin. I just spoke with my MO about this and she presented another idea of basically forcing me into menopause and then taking an AI instead of Tamox. I need to research more. I am scared to death to stop my anti depressant. My husband and I both agree that stopping those meds is not an option. I don't ever want to go back to "uncontrolled" depression. I see my psychiatrist twice a month now. I used to see a therapist weekly in addition but was "discharged" from that well over a year ago. I have seen another counselor a few times since diagnosis. I wish you the best in this portion of the shit sandwich.

ninjamary

Allison - I take Zoloft. It has helped me immensely. I started when my youngest was about 2. I've decreased my dose over the years and am on a minimum dosage now. I've tried to stop completely (ween off) and it's not going to happen. Antidepressants have been a life saver for me. You would be surprised how many people are on them. I also have seasonal anxiety disorder. Unlike everyone else on the planet I get it when the days are long, sunny and hot. In the fall and winter I'm at my happiest.

ThePrincess

Katy - I'm late to the party, but that quilt is so beautiful!!!

Jackbirdie

Thank you Princess!

Still looking for Leigh..,, port coming out today i think! Yay

pboi

Been busy with the kids this 3 day weekend, enjoyed the distraction and of course making memories!

Allison...hoping you're doing well. Are you home yet and reunited with your girls?

Sloth...love the charms! I am finally physically feeling better, chemo and rads side effects and the fatigue, slowly fading away. Every day it feels like I'm physically feeling stronger. I am soooo dragging my feet to schedule my surgery, I mean I'm finally starting to feel good again, just don't want to go back to that place again...ugh! I tested positive for BRIP variant, giving me a risk for breast and ovarian cancer. I'm already on Lupron so I can take Arimidex, so I want to do the oophorectomy so I can get off the Lupron. I will be having a prophylactic left mastectomy at the same time, so I don't have to do an additional surgery. Planning for this all to happen in early November.

Avmom and Diane...I too am having trouble emotionally now that treatment is over. I do feel paralyzed by the fear of recurrence/mets. I feel like I've been in treatment so long, its so hard for me to figure out how to integrate myself back to the world, or figure out what my "new normal" is. I wonder how I can get out of feeling this way, time? therapy? meds? I do have an appointment with a therapist my MO scheduled as part of "end of treatment follow-up" so we'll see what comes out of that. I just wanted to share...you are not alone in feeling this way.

Hope everyone else had a nice 3 day weekend.

PB

BBwithBC45

I'm feeling more anxious than usual again. I've been having bleeding with each bowel movement for the past 3-4 weeks. No pain, but it is possible it is just a hemorrhoid especially since I'm taking daily baby aspirin with the Tamoxifen - the blood is bright red. Still, when I told my MO's PA about it today, she wanted me to see a GI doctor asap, given also the fact that I have been unexplained nausea since the beginning of treatments. So now I'm a nervous wreck.

KBeee

Diane, I had skin sparing, but not nipple sparing, BMX. When they did the reexcision after they found the recurrence, they took a big chunk of the pectoral muscle, so that area has very little muscle between the skin and the implant. My PS did tell me there was s 20+% chance I would lose the implant if skin damage was too bad from rads. When I met with PA of RO, she said that the only skin reaction would be a "mild sunburn". I know this is true for a lot of people with rads, but RO did level with me at simulation that this would not be the case with me. He was very clear that he was being very aggressive giving me the highest daily dose possible, the highest total dose, radiating the whole breast, intramammary nodes near the ribs, axillary nodes, supravlavicular nodes, and a bit of the neck and using a bolus on a big chunk of the area every day. I appreciate his frankness because he did tell me to expect to burn, but I am very stressed about what's to comewhich was evident today by my high blood pressure while there. How are you feeling? Any relief?

Jackbirdie

BB- I am so sorry you've been driven into this state... Again. It is most probably nothing, with bright red blood, but the only thing I know of to permanently relieve the anxiety is to get it checked out and cleared. I will be thinking of you and sending mojo your way.

PB- mostly good stuff, but I can understand why you dread going back into "tx zone". Try to keep enjoying your kids and the moment. Don't invite the future in for tea. Pretend it's not even there. You've done your research. Thinking and wondering about it will not affect the outcome or help you deal with anything. The best thing you can do is what you are doing. Get as strong as you can, Physically and mentally. Enjoy your family.

I'm starting an 8 week hospice class today so Jack and I can go on therapy visits to people individually in their homes who are in hospice care. I'm also hoping that staring this is on the face will give me skills we will all need someday. Unless we are lucky and just die peacefully in our sleep. One can always hope.

All other March sistas, thinking if you always and hope you are doing ok.

Beachbum1023

KBeee, dropping in to share my rads experience with you and all the others. I finished in March, and it was exhausting with 33 appointments, and the fatigue kicked my butt big time, no lie there. My skin held up really well until the last two weeks. I had a right mastectomy, and being triple negative my treatment was ramped up to the max. The nurses used a stretchy fishnet around my chest that held all of the soft bandages in place. And they also used a thin cool gel pad under that. If you use the fishnet you can add ribbon "straps" to make a cami out of the fishnet that actually stays in place!! I'm sure you know what I am talking about. My RO wanted clear 100% Aloe used a lot after the treatment.

While some of the other ladies did rather well, our group had their share of "sunburn". It's no sunburn, but they do heal really quick. My biggest gripe was my armpit. I used a large thick abdominal pad under my arm, all held in place with the fishnet. Today, rads are just another bad memory left over from the treatments for me. I hope everyone does well, in my case small price to pay in exchange for my life.

BBwithBC45

Katy, you always know what to say. Thank you. I will be seeing my GI doctor on Monday, Sep. 14th.

Good luck with your classes.

KBeee

BB, So sorry you have to deal with that. It is a hemorrhoid until proven otherwise. I am not sure if you have ever had reflux, but I had silent reflux from treatment the first time and it seemed to oddly present as nausea, which is not it's usual way of presenting itself. A GI doc could address that too, but for me, Zantac helps a lot. Sorry you have another thing on your plate. Hoping you get good news answers quickly without having to endure too many GI tests.

BBwithBC45

Karen, thank you. I'll stick with "hemorrhoid until proven otherwise". Interesting about reflux posing as nausea.

Trvler

Hi all,

Just wanted to check in. I do feel better today since we were able to get out. We first went for my post op and my rads were confirmed. They got good margins but the ILC was still present as was the cancer in the nodes. The doctor mentioned more nodes being removed but wasn't adamant about it. But I think the DIEP is coming along very nicely and pain is minimal. I don't know if it will be more painful later or what. I think those Vicadin were doing a number on me so I stopped. I didn't have enough pain to justify the nightmares they gave me and I think when I come off the I feel like crap. So I took a Xanax to sleep last night and feel marginally better today.

Katy: I won't be taking tamoxifen. They are going to give me the L drug. I can never remember the name since I had blood clot. I will get those Lupron ? shots.

My neighbors are setting up a meal plan for us but I am wondering it I will feel worse under rads? Did any of you continue working out during rads?

DavisD

I'm so happy to be back in touch. I felt horrible this morning, had to get my rads at 8am before going into a training for work all day. The burning was almost unbearable. I talked to the RO about the consequences of stopping now. He drew me a fancy diagram showing the peak benefit in these last five treatments of course! The RN advocated for me to get a pain med (Vicodin). I got if filled on my lunch break and didn't expect much but it definitely took the edge off the pain the rest of the pm. It's amazing how pain can affect your emotional state and just less pain can feel like such a huge blessing.

Whitney-you're a beautiful person and it will all happen for you when it's right

meme-I'm using a Rx hydrocortisone cream, a Rx burn cream and samples of aloe/lidocaine cream. they all feel comforting but nothing lasting

carrie37-NIce to hear from someone else with a skin/nipple sparing mastectomy. Sounds like you were told exactly what I thought...the skin is thin over the implant. I do remember the RO saying I could possibly lose it but nothing about increased chances of burning badly I don't know what signs of "losing it" would be and trying not to think about it.

pboi-your post really touched me. you captured my feelings so well-being paralyzed with fear of recurrence and figuring out how to integrate back into the world, whatever that may look like. It sounds strange this should be an issue since I worked through tx, I don't feel I was ever fully present. I feel it's so easy these days to drop down the rabbit hole if I'm not vigilant but it's so helpful to know I'm not alone. thanks

BB-I'm sorry you're having bleeding and nausea. Scary I'm sure. sending you my most positive mojo

kbeee-thanks for sharing what your RO told you. I think when I made it to rads I kind of just checked out and didn't ask enough questions. just felt like get this over with, don't want to talk about it. Terrible advocate I know!

Katy-Yea! you and Jack will be such a comfort to anyone you meet just like you've been to me. You are a shining star my friend!

Allison-I'm glad you're feeling better!