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Hi gals!! It is so good and uplifting to read the positive comments amid this trial. We need to see both sides of this.
Sadie, you mentioned "dry and itchy" area. Do you also have an ulcerated tumor you're dealing with? I don't remember reading that. Today both the oncologist and I were pleased with the reaction to the tumor in this one week. He made a comment that surprised me. "If we can get this to shrink enough to have surgery." I asked if he meant we would do surgery before it shrunk completely. His reply was that may be a possibility. Hmmmm. I get the port in soon and will ask the surgeon her opinion on that. Wonder if because I'm responding well, and the cancer hasn't spread as we expected, this may be a viable approach. Keep it in your prayers for wisdom.
Yes Hospice is a great financial, emotional asset. We're spending big bucks on all the items to dress this wound. Amazon comes to the house a lot!!
Marla, so glad you are improving every day!!! I forgot that nail issues were part of this. I really don't recall seeing that in the information we are bombarded with. Right now I am getting Keytruda, Taxol and Carboplatin. Had a slight reaction to Taxol today with increased breathing and nausea. They had to stop that infusion, give me a "rinse" and then restart at the lower rate used last week. Think the increased breathing was because my pulse was dropping and they stabilized that.
We are all putting on the miles with our vehicles : ) Who knew that was a cancer side effect.
Love, are you still getting together with you Cancer Art group? What project(s) do you enjoy working on?
Take care and love to hear from you all!!
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Hello to all of you lovely ladies!
I am now 14 days post-chemo and feeling almost like myself. The numbness in my fingers and toes continues but a little less every day. As we enter February my countdown begins to take care of my preop requirements. I have lost 6 nails so far and am thinking of having the acrylic nails put back on a few of my fingers. I know that for surgery they don't want acrylic nails on the index finger, so will see. I have had acrylic nails on since 1985 because my nails are paper-thin and peel anyway. At least my hands always looked nice. But not long nails at all.
I am so happy for Cloah that the tumor is shrinking! Such good news! I will like to have your updates that are so positive.
Just a short note today! take care all
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Did you have an Ultrasound to see if the tumor shrank? My Oncologist and surgeon had one done mid-way through chemo to see if it was working and tumor had shrunk. Tumor shrank by 1cm. My surgeon indicated that it needs to shrink to 2cm or less for me to have a lumpectomy. It's at 2.3cm now. My last chemo is next week. 6 cycles of docetaxel with Herceptin and Perjeta targeted drugs for HER2+ protein. They dropped the Carboplatin after 1st round due to severe side effects.
FWIW, I've read that only about 30-40% of tumors shrink enough to be considered pathologically complete response where no cancer is found in tissue removed during surgery. If cancer is found, or found in lymph node samples then it's considered residual cancer and requires additional treatment via chemo and/or targeted drugs. I'm hoping no residual cancer is found in mine when I have surgery mid March, but I don't think it will have shrunk this much by then. Essentially no tumor.
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Hi Roc, good to see you on again. My tumor is still HUGE but can visually see that it is shrinking because of chemo. I can actually lift the edges and see some of the breast skin underneath and am pleased it looks pretty decent. Was wondering if tumor may be destroying it. Must be nice to know you have one more session of chemo!!! Wednesday a young man "rang the bell" as he left indicating he was done with his program.
The last two weeks I've had the nurse put ice in ziploc bags I then place in my booties and mittens when they give me the Taxol. Seems to be working well.
Take care and keep us posted!!
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@LifeInBloom100 I'm thrilled to hear you're done with radiation!! And thank you for you kind words and encouragement on this and other threads.
@marlakeeth Likewise, I'm thrilled you are done with chemo! Such an accomplishment! And I'm so glad @claoh and @RocDocVic are seeing tumor reduction with their chemo!
@Sadiej You're doing a little better each day was exactly what I was hoping for for you. I pray that it continues!
@claoh I'm not really doing any art projects as I'm not leaving the house much, except for appointments. I had signed up for a virtual Art Museum tour this morning but woke up too late. They do them every Friday morning, so I will try to set an alarm and make it next week.
You also asked about my "intellectual pursuits". My work is very intellectually demanding and my difficulty with concentration, attention span, and "brain fog" has been anxiety-producing and frequently distressing. I'm trying to be gentle and patient with myself. I started a couple weeks ago with some word searches and sudoku puzzles. Then a former co-worker gifted me with a very unique type of logic puzzle book and I've been working (very slowly) my way through that. Before my disability leave, my technical mentor had recommended some physics type courses (both to refresh and to learn some new content). That's what I'm trying to add into the mix now. I wasn't able to start on Monday because the Coursera courses I had picked out are free through my employer but I needed some info from work before enrolling and I can't access my work email while on disability. I got it all sorted out now and I've finished the first few lessons. I had hoped to be able to whip right through the first course as it is mostly review but only managed about 75 minutes so far. Again, I know I need to be patient and 3 weeks (until I go back to work) can see a huge difference.
This week has had both challenges and blessings. (Don't they all?) I did get my last drain out Tuesday. @Sadiej It's hard to explain my feelings about the drains. I can't say they hurt OR didn't hurt. They were uncomfortable ALL THE TIME, frustrating to deal with just with clothes and going to the bathroom multiple times a day, easy to accidentally hit or yank a little, which did hurt, sometimes terribly so. And the drain sites on my skin, though closing, look terrible. Hoping to not have an infection at the site of the most recent removal. I'm very, very glad to be done with them. I also finally heard back from the TPA with approval for my disability leave. Yep, the 8-week leave that ends in 3 weeks. It was an absurdly long process that added additional stress.
I am straightening up more and doing some walking in the house without my walker. I easily overdo things so I'm trying to pace myself. This weekend, I might try to sleep in bed for at least a few hours (instead of the recliner). Don't want to try on a work night for my husband and risk keeping him from getting any sleep. I remember it was a process transitioning from recliner to bed after my mastectomy too.
We are borrowing a wheelchair from a friend and going to try to get out of the house, get some fresh air, and just do something different tomorrow, which will likely mean a trip to Disney just for a few hours since we have annual passes and it doesn't cost us anything (unless we get food, which we always do, lol!).
What will you all be up to this weekend?
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Morning ladies!
Current events in my life? I sprung a leak! 🤣 Yup, that's right. I sprung a leak in my right arm (the one with lymphedema). The pressure in my arm grew so great from the swelling that the lymph fluid broke through my skin and started dribbling down my arm. I guess this is called lymphorrhea. Anyway I put Neosporin on the "wound" and applied a gauze bandage to it to soak up the fluid. I used tape to hold the bandage in place and to get continuous pressure on it. I then called Hospice to let them know what happened. Hospice wanted me to go to the emergency room but you know what? That would have been 5 times in three months and it usually means readmittance to the hospital. NO THANK YOU. Needless to say I didn't go. They called this morning to see how it went and we told them I didn't go. The nurse said it was understandable and said for me to weigh myself daily (same time, same clothes). If I gained 2 pounds in 24 hours or 5 pounds in 5 days I needed to get to the hospital. Fair enough. :)
I'm so glad y'all are doing better! It seems like this group has had some pretty serious struggles but you are all pulling through and I am proud of you all! It has been a real tough go for you and I am grateful that we all have managed to stick together. Can't wait to hear your next report. Marla I was so glad to hear that your neuropathy is getting better. And Claoh I'm excited for you that the tumor is shrinking. Reminds me though that we have not talked about ports on this blog. Seems we've talked about everything else lol. And no I don't have an ulcer. Just itchy skin and a new pain in my breast. Lovesprimes I think it's fantastic for you to get out to visit Disney! I'm looking for a wheelchair for myself right now so I can get out too. Is yours manual or electric? Anything I should watch out for? Rocdoc I had an ultrasound on my last bout with breast cancer in 2013. When they did my lumpectomy they also took out the sentinel node which was clear. Still, I had to go through 6 weeks of radiation (not everyday!). Lifeinbloom congratulations on getting through radiation!
Okay, enough for now. Y'all be blessed and have a wonderful day! Hugs!
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Wow Sadie, it is so unfortunate and sad!! Hope you don't gain those pounds and keep it under control (of sorts).
Had my port put in Monday and used it first time today for chemo 3. Was surprised that it is completely invisible to the naked eye. I thought it would be some sort of plastic contraption on the skin. Today's chemo was more difficult than first two - more like what I expected. Had another slight reaction to Taxol and was woozy enough to use a wheelchair to get out to the car. Slept some more when I got home. Feeling better now. Can't wait to get a shower tomorrow. Was told Monday not to do so until Thursday. The tumor is continuing to shrink but is getting more bloody as it does so. Learning to be a quick change artist on those minstrel pads without dripping all over the place. I was surprised to see my white blood count was low on the blood test. Didn't think they would administer the drugs if below normal.
Love, hope you got to Disney last Saturday, even with the brutal winds.
Take care all, and love to hear from you!!!
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One full week and no one talking : (
Had another chemo today and no reaction to Taxol going at slower rate. Tumor continues to shrink and could even hear joy in Dr.'s voice to results. WBC low, but not low enough to discontinue chemo.
Prayers are going out to all, not knowing if you've had a week of improvement or not.
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I'm sorry for not posting for a while. I'm so very glad to hear your chemo continues to go well, @claoh , and for the tumor to be shrinking.
I'm getting around a lot better but I easily overdo it. And I continue to have multiple areas that are not healed up but the surgeon's PA feels like they are coming along and she changed the treatment under the left side. I'm driving again but mostly just dropping off or picking up our daughter from the fast food restaurant she works at or places I can drive through. I've been getting around the house primarily without the walker and just take it if I'm going to an appointment or something, for stability. I'm still very anxious about the possibility of falling.
For the first time in my life, I saw a psychiatrist this week. I left with feelings both of shame and relief with my diagnoses. I'm praying especially that I can get my anxiety under more control before resuming work soon.
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Hello to everyone!
I have been quiet for the last few weeks. I'm just trying to enjoy life without chemo! I have a lumpectomy Feb 28th and have been busy getting all the pre-op testing done. Next week on Monday the 19th I have an appt with the radiation oncologist. I am anticipating having radiation for 30 treatments, although I don't want them. Such is life. I am contemplating having a hysterectomy later since the kind of cancer I have doesn't go away but moves around. Triple-negative and it always comes back somewhere I have been told. My internist Dr. wanted to know why I did not have a double mastectomy now since it may come back. I explained that my oncologist and breast surgeon both said whether I had a double mastectomy or a lumpectomy the chances of a return were the same. I might have a double later will see. that is about all I have for now. My mental attitude is better than weeks ago now that I have no chemo in me, but I still have neuropathy in my fingers and feet. I hope that this will go away too with time.
Cloah, so glad to hear that you are doing so well!
Sadie, what kind of cancer do you have? So sorry I have forgotten this info.. Chemo brain!
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when is your surgery, you mentioned in February. How is your chemo going?
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Hi Marla. Finished up with docetaxel on February 7th. Will have Herceptin and Perjeta targeted drugs on February 28th. Had Ultrasound on February 1st and I qualify for a lumpectomy. Surgery is scheduled for March 14th. I go 3 days before so they can mark the tumor with metal marker for the surgeon using Ultrasound and Mammogram. No pre-op tests scheduled. I'm a little miffed with my Oncologist. She has not discussed radiation nor schedule for this. Nor process for testing the tumor and sentinel lymph nodes, and when I will get pathology report and have follow-up meeting to see what's next. I got fed up and I bought airline tickets to Baja California Sur Mexico to visit friends for 3 weeks. I leave 2 weeks and 2 days after surgery since my surgeon said 2 weeks to recover. I've told my nurse navigator that I'll be back the 3rd week of April. I did request a meeting with my Oncologist so that will be next week. I'm going to tell her I'm not happy with the lack of communication about the process and that I need to know going forward.
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RocDocVic
In regards to your pre-op testing, usually within 20-30 days before surgery. Radiation usually starts 3-4 weeks after surgery. Not to feel bad, but I had to ask my oncologist about radiation as well. It seems like they only give minimal, need-to-know information. I asked what happens after my post-op appt, any more chemo or what? Then she said would wait to see what the pathology report says, maybe oral chemo. What about my port? When can it be removed? "I like my pts. to keep it for a year or two, just in case we need it again, but need to flush it every 3 months or so"
so don't feel to irritated with your doctor!
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Good morning ladies!
Glad to share the news that I haven't sprung any more "leaks". Just had that one instance and that was all.
I had my second PET Scan on February 10th with my oncologist visit on the 12th and a phone call with her on the 14th. Considering that I stopped chemo of my own accord back in September (wouldn't recommend that, BTW), there was hardly any noticeable change other than a small increase in the mass in my breast and a slightly greater increase in the supraclavicular region. Now that I'm back in the saddle again so to speak, my oncologist is not putting me back on chemo again. I will be taking a special drug called Xeloda (pronounced Zuh-load-a). The interesting thing about this drug is that anybody can take it but the drug composition is different for everyone. It is specially mixed for me through the pharmacological lab. I continue to take it for 2 weeks with one week off. The only difference is I take it twice a day. This will allow me to wander around the country before I have to come back see my oncologist again. :-) I like the idea of the medicine because with my triple negative there really isn't any getting rid of it in my case. Especially since it has invaded the lymphatic system. Of course at first she will see me a lot more often but that will change with time.
Not much else to say. Claoh, thank you for your prayers. It seem to be working well on me LOL. :-)
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I had chemo until my tumor shrunk enough for surgery, and had a lumpectomy two years ago and have been cancer free since then. But I did end up with neuropathy in my fingers and that is why he stopped giving me chemo one treatment early. Don't be afraid of a lumpectomy...my dr. told me when I was considering mastectomy that lumpectomy had just as good and outcome and there are complications with mastectomy, so I went with the lumpectomy and glad I did. But keeping in mind that everyone is different, you have to make your own decision. Best of luck and prayers to you!! Sunny
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I am so glad to read relatively good reports from everyone!!!
Some is still very sobering, about TN being so invasive and having to deal with it the rest of our lives. That is what I did not want to do and the original choice I made. That being said, it is so good to watch as this tumor shrinks from my breast, knowing I did not want to deal with it's growth the rest of my life. Also, having read that they hope for a TN vaccine in five years, that is also what I hope we can all tap into.
Praises for a good week for all of us!!!
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I found it odd that there is no pre-op tests. I've had them before for other surgery, but perhaps they feel they have enough info for anesthesiologist. However it will be general not just sedation anesthesia and they usually like to have it for general anesthesia. I agree, they only like to provide the bare minimum information. This is unacceptable to me. I don't appreciate it having last minute information sprung on me where I have to scramble to change my schedule and research the information. As for starting radiation I've read upto 6 weeks max, and I should be back in time for that. However, if it's going to be scheduled I'd like to know now rather than later. If I can go to appointments to do the pre-rad setup before my trip we can get it done then and I can meet/discuss the proposed treatment schedule and options for radiation amount then with Rad Oncologist. Lots of questions too about a proposed drug, T-DM1 that was briefly mentioned back in late December when I found out tumor was shrinking and I mentioned good chance of clear margins with lumpectomy. Onco then said if residual cancer is found this drug would be used. No discussion on differences between this or continuing with Herceptin and Perjeta which is used for my cancer type - HER2+ No discussion on odds of cancer returning or survival rates for each treatment option. T-DM1 is a very toxic chemo drug that can damage the liver, lungs and heart, not to mention continuing neuropathy. It's a Trojan Horse type drug that is inserted into cancer cells, and sometimes your good cells, and delivers the toxic payload. Also, 14 cycles typically done so I would not be finished until next January or February vs October with Herceptin and Perjeta. No discussion on how they would monitor residual cancer or use of liquid biopsies- blood tests that look for cancer cells and your specific tumor DNA. Tumor needs to be tested for genetics and DNA. FDA just approved a test for this. Medicare covers it if you're stage 2b or higher. I have been initially staged as 2a but sentinel lymph node test results could change this to 2b from what I understand. Sadly, I've had to do a lot of extensive research/reading since Oncologist is not providing any information. If I'm going to have to make decisions on my treatment I want the information up front, not dropped at the last minute because they're afraid we'll walk away from treatment. This was actually told to me by sister - her daughter is an Oncologist at Sloan Kettering who specializes in ovarian and uterine cancer. They prefer to hold their cards close because they're afraid they'll scare us off. So much for open honesty!
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The key is to ask questions, no matter if you think they sound dumb (and there is no dumb question). Question everything about the process. Write it all down before you see the dr. And if you don't trust your cancer team, it will affect how strong you fight. Praying you can get all the answers you need to feel comfortable with the treatment. Ask them about other options. I'm glad you are researching on your own. Best of luck to you! Sunny
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Welcome to a new week, my friends. I am struggling with anxiety about returning to work next Monday. Thankfully, I'll be able to work from home at first but even being able to sit at a desk for several hours seems daunting right now. When I try to sit upright (versus recliner) for more than a couple hours, my back and my knees hurt so badly, I could cry. Same with getting around. I have hardly used the walker the past few days and it's hard for me to untangle how much the knees/back issues are because of that versus non-reclining sitting. (We did use a wheelchair for me at Sam's Club though - I knew I wouldn't survive walking very far there!) I'm trying to show myself grace in advance. I'm going to "show up" and do what I can for as long as I can and hopefully that will increase as each day and week goes by.
I will be seeing my cancer support counselor tomorrow and need to discuss my psychiatrist visit this past week and her diagnoses. Not cancer related, but I'm also in the midst of worrying about how much taxes we will owe this year and securing new home insurance, hopefully not at an outrageous cost. (I know this applies to more than FL, but here, lots of homeowners have been put in this terrible spot, having our home insurance provider leave FL, requiring us to find a new insurer with not a lot of options.)
This week, I just have the counseling appointment and my weekly OT. What do you all have on the calendar this week?
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I am so sorry for you, I know that you seem to have a great deal of pain and discomfort that you were not expecting. I do not know what kind of work you do, but I am thankful you can work at home now. I hope the next week will find you with less pain and anxiety.
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