November 2014 Starting Chemo Crew

Leslienva

Dee4C, I also had an ache in that area but it was the tissue expander. The pain has gone away now

TallyLassie

Good luck on round 4 Minivan!

I saw my Oncologist today for my hands, which the Taxotere is tearing up. We'll try a vein farther up the arm next time. I still don't want a port for my last two chemo treatments.

Regarding surgery and radiation: He looked at the radiologist's notes and told me that they won't really know whether or not I'll need radiation until after the surgery when they can really do pathology on the margins and nodes. He thought I was trying to "put the cart before the horse" on getting an answer regarding radiation before surgery. He said he had just come from a tumor board meeting regarding a patient who had started reconstruction at the time of surgery and they found cancer cells which means she'll need radiation and it will set her reconstruction back. I guess it's better to be safe than sorry and it could just be a few weeks between surgeries if I don't need radiation. At least that's what I heard today.

Getting genetics results on Wednesday, which should bring things into better focus.

enlm20Erica

Hey guys! Well Ihad my last treatment Wednesday and to be honest it's been pretty rough. ..I'veBeen in bed for 3 days uugh. .This is the only time I've been this affected by the chemo, but I'm glad it was the last one! My husband thought it would be nice to get shirts for my last treatment so we did and EVERYBODY in the cancer center LOVED them! I'll post a Pic for you guys. I really thank God for getting me thru chemo and everything else I've been thru and going thru...It has been the most challenging time of my life!

We got over a million likes when someone posted our pic on Facebook! Ifanyone wants these you can order at

https://www.booster.com/cancerfightersww

TallyLassie

Erica: CONGRATULATIONS!! You go, girl! You look fantastic, and what a great husband you have. Thank you so much for starting this discussion group. I've enjoyed learning from my chemo buddies and sharing all our woes and successes together. I don't know if you're part of the Facebook group that Bonnie put together, but I'm sure they'd love to see this shirt. I hope you'll still check in sometimes, but I do realize (and hope) that the November 2014 Starting Chemo crew will all graduate. My last one isn't until February 25. Good luck to you!

enlm20Erica

TAlly, thanks so much and I too am very happy I started this post, everyone here has helped me in one way or another. .. chemo is over for me but i have 2 surgeries before i can say Yes! Its Over! And Live Life. I will definitely be checking in! I may have to log in from my husband's fb page, I don't have one. What's the private group's name?

Dee4C

Erica, awesome shirts and you both look great! How inspiring to wear those!! You are a warrior, love it! So happy you are on your road to recovery!!

Leslie, good to know about the ache! My mind wanders even though onc assures me it's ok. I can't help but think they told me lumps were benign and were wrong so how does anyone know for sure. But hopefully it will just go away in time!

ThinkingPos, I'm sorry about the possible lymphedema. I did not have a full axillary dissection. My surgeon does not do that anymore, they do the sentinal biopsy. You're so right how doctors can be so different in their process and thinking. I don't know the right answer but I guess it's good to get second opinions. They may have still recommended radiation for me even if no lymph node involvement. I had extensive DCIS and multi-focal tumors with bad margins. I am only millimeters from normal tissue (they call that clear, I call that scary!) I need full right breast radiation, under arm, and supra clavicle. Under arm will increase my lymphedema risk a lot. It sucks that it's for life, not just a short time frame. My plastic surg says there is usually always something that can be done after rads for reconstruction. I had implants before so after surgery he had already filled me to 300ccs, which was nice to have something. I already had the pocket and the muscle was stretched. For you, just go with what feels comfortable and you're happy with. My fills were only 50ccs each time so 80 or 90 at a time may be too much for you. You can ask them for less. It was just my last fill that was really uncomfortable, so tight and sore. That's why I skipped the last 50ccs.

Good luck to you!! We can keep each other posted on rads and TEs.

Denise

ThinkingPositive

Dee4C, thanks so much for the reply. Its always good to have someone to talk to, it makes things just a little easier.

I just wish I know more about lymphodema to know if what I have is in fact lymphodema. I can only imagine...but want to know the extent...is what I am feeling mild case or more than that. No one seems to be able to tell me. Also.. when you have lymphodema are you supposed to be seeing a doctor as well Like primary care physician.. or anyone who directs you other than the PT?

Of course now I started to have some upper back pain and don't even want to think about what it could be.. can that be from sitting too much at the computer, lymphodema, I just find it hard to believe that i could still be experiencing discomfort, swelling, back pain..12 weeks after mastectomy.. Anyone else not right after 12 weeks.

WheelyGirl

I had a lumpectomy 3 months ago and still have pain on occasion from that.  I also developed Axilary Webbing Syndrome (sometimes referred to as cording) from the 3 nodes that were removed but mine was minor and has already disipated.  I am not sure about the back pain you are experiencing but would definitely check with the doctor about that.  Good luck and hope you feel better soon!

ThinkingPositive

wheelygirl, I also was told that I have cording...that was the reason the Lymphodema Physician I saw sent me for PT. In addition to the swelling that I still seem to have. I guess exercise is what helps it. What did you do to help it along? For weeks after the surgery I had no problem, had full range of motion in the arm, shoulder area, then about 3 weeks ago I noticed that when I put my arm straight up there was pulling and a little pain.

TallyLassie

Erica: The reason why so many went to Facebook is that the questions and replies here get so strung out and mixed up! It's probably more trouble than it's worth to get on FB if you don't have an account, since it is a secret group you have to send a personal message to Bonnie Deahl and she clicks you in. With your permission, I could share your good news on your behalf, or I suppose they'll just have to come back here and check it out.

All: I asked my doctor why some only get 4 rounds and some lucky ones like me get 6. Some likely get even more. He said it all depends on the type of cancer and how it responds. One thing I'll be mindful of....I was at chemo one day when a woman came in for her last treatment of Herceptin after a year. I told the nurse that there should be a celebration of some sort. She whispered to me that they used to do it, but that some of the patients in the room do not have an end date for their chemo and it brings up tough emotions. Sad but true. I truly am one of the lucky ones to have an end date to my chemo.

It is interesting how we are all starting to phase out of the chemo part and moving on to the surgeries and reconstruction. I suppose that's a whole separate group, already started somewhere in these boards! It is a good thing to put this behind us (but I'll still be in chemo for another month), that means we're moving on to better health!

enlm20Erica

Tally, of course you can tell them! And I just might start another fb page! Thanks!

Metta

Erica, huge congrats to you! You look great (even if you don't feel it now). Love those T-shirts ... what a great idea and what a supportive husband! I'm sorry you're not DONE done. You will be. I can't thank you enough for starting this group. It is so good to have a place to ask questions and just vent. Thank you, sweetheart!

Dee, I wonder if those pains could be your liver and could just be wear and tear on your liver because that's what is processing all these chemicals. I bet it's more likely to be the tissue expander like Leslie said. My silly back pain is happening on the other side, too, so I'm going to stop worrying about it. That has been my biggest challenge with all of this. I was a worrier to begin with, and sheesh, give a worrier cancer and it's a total mess. More yoga!

WheelyGirl

ThinkingPositive- I really did not do anything, thankfully I have had no discomfort in that incission.  I raised my arm one day to scratch and felt something odd so I looked at it in the mirror.  It scared me so I began to research and found out what it was.  My oncologist had never heard of it so didn't know what I was talking about but my surgeon did.  He felt it, said it was a minor case and would probably go away on its on and it did.  I have not had any discomfort so far in my lymph node incision but I have read a lot about lymphedema and really hope I do not develop it as it sounds like a very uncomfortable thing.  I hope yours is not too bad.

Dee4C

Metta, yeah for sure I worry that the pain is my liver. But my blood work is totally normal so onc thinks it can't be that and just from surgery. I know what you mean about worrying. I am getting better at trying to avoid the pre-worry of the future and just trying to enjoy the present

ThinkingPositive

Does anyone have any skin discoloration from the chemo...anywhere on their bodies?? Is that a side effect of chemo?

amylsp

Had my 5th Chemo last Friday, only one more to go (2/13)! I'm anemic, and now my platelets are a bit low as well. My MO seems more concerned about the platelet count, and slightly lowered the dose for Carboplatin this time around. He also lowered the dose for the steroids on the 3rd day (only 1 pill instead of 4) due to all my gastrointestinal issues, and I'm happy to say this is the first round that I did not experience the severe heartburn, which was a great relief! I"m still pulling out of the first week funk, but I will work today and feel up to it (sort of!).

I'm also getting 6 TC treatments instead of 4, which is fine with me, tbh. My MO said it's due to the aggressiveness of my tumor which is Her2+ as well having micropapillary features. I also showed evidence of lympho-vascular involvement in addition to the one node that was positive. So I think 4 vs 6 might be based on how aggressively the MO believes the cancer should be treated. I think 4 treatments is standard at this point, and 6 is probably reserved for more aggressive cases.

I had axillary cording develop in my arm after my three surgeries. I stretched it and massaged it myself and it seemed to clear up. After 4th chemo though, it reared it's ugly head again and I was experiencing pain when reaching up for things. One thing I discovered though was that I was really dehydrated at the time. Once I re-hydrated, the pain disappeared and has not returned. I will definitely see a Lymphodema specialist once I finish Radiation, but it was interesting how lack of hydration made the cording worse. Just thought i would pass that on.

Glad to see so many of us finishing up with our final chemo treatments. I will still post updates here, but hoping to see some of you over in the spring radiation thread once that gets started.

ThinkingPositive

I asked my MO about doing 6 TC taxotere/cytoxan - the standard if 4, I had 1 node positve and LVI as well..thought it might be good to do 6. Could not subject my heart to ACT as I have extremely high blood pressure and some minor things as well. He said he would check, not sure if there would be any benefit or what the long term side effects could be as a result. Anyone here do 6 of TC?

MarcelaBR

ThinkingPositive I am doing 6 of TC + H + Perjeta... I'm Her2+ and this is the second time I'm doing chemo, so maybe thats why I'm having 6 instead of 4... Have only one more left but honestly I feel like running away to Siberia just so I can skip it... I won't...but wishful thinking hahahaha

thatcameragirl

For those of you with cording I just wanted to share my experience. I had experienced the tight sensation when raising my arm about 4 weeks after my lumpectomy surgery. My dad had lymphedema in his leg so I was super paranoid about it and went right away to a physical therapist. They measured my range of motion and it was much worse than I realized. Then they showed me the cords and popped a couple right then. You can literally hear them pop! It's creepy but it feels so much better when they do. I went twice a week for about 3 weeks and they were able to break them all up and I got full range of motion back. Also, the cording is a form of scar tissue that you want to break up because if not it can impede your lymph nodes from working properly if they get too intertwined with scar tissue. They said it's great that I came right away because with lymphedema it's all about catching it early. They also got me a sleeve to wear when exercising and if I fly on an airplane. Hope this information helps!

ThinkingPositive

How do they pop the cords. My PT says mine is not that bad...but I want it to go away. Does cording make you more likely to develope LE in the arm? Just went again today to the PT...she did massaging of the cord area and in the underarm area and gave me a bunch of exercises to do. No one has told me yet to get a sleeve...I have no swelling in the arm area...

Leslienva

I had cording after my lumpectomy in2000. I had several sessions with the PT and it went away. I never had a problem with lymphadema and have flown all over the world without a compression sleeve.

Jumpship

This is my safe place. I just finished 4 of 6 TCH and have spent most of the day feeling yucky and running to the bathroom. I anticipate tomorrow will be better. I really can't imagine doing two more rounds. It is so yuck and a bit unpredictable and makes me sick.

Worse than that for me are my tween and teenagers. Now I know I'm supposed to think all positive thoughts and all but some days I just see that all I'm trying to do as a mom just isn't working. One kid won't even look at me because he doesn't like the way I look. I know he's not trying to be mean, just being a kid and coping. But losing the relationships with my kids that I had before cancer is more difficult than feeling nauseous. Sure everything happens for a purpose and the docs give me an 80-90% chance of being here in 5 years but days like today I just want to say yes, maybe someone can mother them better than me and maybe that person is coming soon. Today I'm not only not well physically I feel like I cannot stuff my sad feelings of my relationship with my kids and my future. There is not a soul I can say this to because that would mean that I am not fighting cancer. Sure, tomorrow I'll come out fighting and be positive but today I just want to acknowledge my feelings.

Thanks for letting me share

Redhead01

Minivan....I feel your angst. Since most of us in this group are well into our chemo regimes or done, the full forces of what we've been through are hitting like a brick wall. My kids are in their 30's now, so I can tell you that BC or not....teenagers begin to pull away from us....its natural and normal, so try not to take it too personally. I highly doubt they want a new mother, so cut that self-depreciating thought.

My relief of my last chemo on Jan 15, has been replaced with being so fed up with feeling sick and tired, with no end in near sight....I'm hearing 4-6 months after to gain some strength , and I've yet to even start radiation. I'm tired of the fight too. I don't feel like I'm a survivor.....just barely surviving instead. I pity anyone one around me, expecting me to be on the mend but I'm just not!

This all sucks...but there is the chance...that tomorrow will be better than today. Dear God, please bless us all with more peace and patience to endure this with grace. Amen

WheelyGirl

redhead01-I feel exactly the same. Last TC on Wednesday but I still feel like crap from the 3rd round on Jan 14th. My emotions are out of control and I feel like the only true friend I have is my husband and even he is getting tired of me being sick all of the time. I can't imagine 5 weeks of radiation after this but I am one of the lucky ones, my surgery is behind me. I hate this cancer shit and want my old life back. I may be feeling a little sorry for myself but I can't even tell anymore. This sucks! Ihurt for you minivan as I could only imagine going through this with teenagers as that part of life as a parent is hard enough by itself.

Hugs to all, tomorrow will be a better day!

Redhead01

Wheelygirl....I just noticed our dx/treatment course is almost identical. I too, didn't feel "recovered" from my 3rd chemo before the 4th came up, felt cheated out of that one good week....but at least my last good week was at Christmas. Congrats on having your last one this week, enjoy knowing that much is done, hunker down for the long haul.

I'm having my port removed on 2/19, then heal a few weeks, getting rad sim mid-March. I'm laying on my belly for rads, and having to lay on the port besides would suck. I'm thankful for the break, rather than wanting to get it over with.....either way, time passes, and by the looks of things, it's months of fatigue either way. Have you visited the Winter Rads board yet? I have...time to get saddled up for the next battle, and these women here are great, as the medical community dismisses most our complaints. They have the best advice based on experience.

My husband has been my best cheerleader too. I'd be sick of me by now, so either he's a good actor or really does love me!

WheelyGirl

Redhead01 - I have to lay on my stomach for rads as well.  I had an ASD (Atrial Septal Defect) repaired in 1991 which left my heart enlarged (because I waited so long to have surgery due to insurance and pre-existing condition clauses blah blah blah) so they are laying me on my stomach to avoid the risk of the radiation reaching my heart.  I did not think about the port, I am glad I read this post, another thing to ask my MO about today.   I have not been on the Winter Rads board yet but will go check it out.  My cousin had breast cancer four years ago so I have been emailing back and forth with her, our breast cancer diagnosis was similar except she actually had uterine cancer first and 2 months into her treatment for that she was diagnosed with breast cancer (they told her the two were not in any way related except she was hormone receptor positive in both tumors) she said she had been taking a soy suplement for her menopausal symptoms and they told her that could have contributed to the cancerous tumors.  Cancer is a nasty thing.

My husband is wonderful as well!  I have never been big on crying and such but it seems like the faucet has turned on and I can't turn it off and he just listens when I turn into a blubbering idiot, I thank god everyday for giving him to me!

Metta

Minivan, I've had the same awful thoughts. It might make you feel better to know that studies show that thinking positively does NOT cure cancer. We are allowed to wallow sometimes. My chemo nurse was telling me that I'm lucky my kids are 8 and 10 because teenagers do not react well to sick mothers; they pull away and refuse to talk. What your kids are doing is normal. I know you'll know exactly what to do with them when you have the energy. Just think, you only have two more horrible cocktails to go! Please call your oncologist and ask for more anti-nausea meds. Don't suffer when there are many, many medicines that can help.

karen1971

hi ladies, I know it has been awhile here too. I had my last A/C chemo done jan.27th. I start taxtol feb 17th. for 12 weeks. I have been trying to keep busy and not let this get to me. I have been staying strong for my boyfriend. but really I feel so tired, weak and whipeout. I have been pretty will been working in my greenhouse up stairs.  I have been thinking of each and everyone of you ladies. my boyfriend is there for me but even though his sister lives across the street, I pretty will have to clean the house, do laundry which I don't mind. the part I don't like is go to the store. but I also lost some one very special to me, I lost my cousin (my buddy). he was 36 years old and I couldn't go to his furneal  because I couldn't handle the long trip and I didn't want to be sick.

amylsp

It's been very quiet in our thread! Just wanted to let you all know I had my LAST Chemo treatment on Friday the 13th of all days, LOL! All 6 TCH treatments are now behind me and it feels so good. I will continue with my Herceptin treatments every three weeks through the end of October, and will start Rads in about 4 weeks or so. So happy to be moving on with my treatment. My thoughts and prayers are with all of you still finishing Chemo, and a speedy recovery to those of you who have finished. Maybe I will see some of you in the Spring Radiation thread. Hope everyone is doing ok!

enlm20Erica

Good to hear from you Amy and CONGRATS on finishing TCH chemo! It has been quiet here, many have finished chemo and now prepping for the next step like me! March 2nd I go in for ovary removal and hysterectomy and from there permanent implants will be put in. I hope everything goes smoothly for you from here on out!