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Ladies
It is Monday the 19th and I had my consultation with my radiation oncologist. Seems to be straightforward and has little to no complications. I have surgery next Wednesday the 28th and will have several post-op appts with the surgeon and oncologist then see the radiation oncologist for CT and then make the plan. I thought that I would be done with radiation at the end of March, but now more likely, end of April. The timing of things does not matter since I am retired and at home anyway. That is it for now!🙃
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Have my normal chemo on Wednesday. Made a dinner for the first time in quite a while this evening. It felt good, even though it was more tiring than expected. Hope to do one or two a week. David has done a super job but do miss some dishes that I make.
Tumor continues to shrink and I love to see that.
Glad to read all of your posts and keep informed on each of our journeys.
Take care!!
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Glad you got to meet your radiation Oncologist and go through what to expect. As I had previously mentioned my Oncologist has said nothing about radiation nor schedule for it. No appointment with radiation Oncologist made, yet surgery is about 3 weeks away and I leave for Mexico 2 weeks after that. I don't return until the 3rd week in April. CT scans and other test procedures cannot be scheduled at the drop of a hat as they seem to think.
Finally got in to physical therapy for my neuropathy and weakness/balance issues caused by the chemo drugs. A lot of work to do there over 24 scheduled appointments which will last into May.
I see my Oncologist tomorrow and hopefully I'll get the details on what's planned going forward. No more BS from her. No more not providing information to me. That's it for now.
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Good morning ladies!
So far so good for me,
My lumpectomy is tomorrow and today I have a mammogram, ultrasound, and Savi seed placement and I think the dye injection. Not worried about the surgery, just the outcome. I think that there is no node involvement, but will see what happens post-surgery. The neuropathy has continued with no change for the last few weeks which I am not happy with, but oh well it is what it is.
I hope that everyone is okay with their treatments and just living.
The posts are fewer and fewer now. Will update you all when I can.
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Look forward to hearing from you as soon as able Marla. Thoughts and prayers are with you during surgery.
Love, how did it go having gone back to work this week? Hope well.
This weekend was a bit rougher than past. Did not feel like eating for 3 days so subsisted on yoghurt and energy drinks. Lost abut 4 lbs. Felt better today but had told David yesterday that if I didn't, thought I would cancel my chemo tomorrow. Guess that's what I have to look forward to - longer yuck days as more chemo is in my body.
Take care all.
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@marlakeeth I have been thinking of you and praying that all went well and you are getting lots of loving care as you recover.
@claoh So sorry that the yuckiness of chemo is lasting longer now. How many more sessions do you have to have?
I resumed work Monday, thankfully from home. As I anticipated, sitting up at a desk was the greatest physical challenge. By the end of the first day, my back hurt so badly, I almost cried. Tuesday, I decided to order a seat cushion with an opening underneath the tailbone. It came that night (what did we do before Amazon?!?) and the next couple days went a lot better. Not completely pain-free but much more manageable.
Now that I am past the "big" surgeries, I am having to get real about the financial toll this past year has taken on us. Cancer takes so much in every area of life, doesn't it? I'm hoping to feel empowered by getting on top of this area, especially in the budget area of groceries/eating out/discretionary stuff. At the same time, I need to be realistic about energy level for shopping and meal prep. If you have any suggestions, I'd love to hear them.
Please be extra compassionate toward yourselves, lovely ladies. I'm praying for you!
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Glad to hear the week got better as it progressed Love. I have 10 more chemo sessions. The four last ones will be the strongest so not looking forward to that. Was hoping since the tumor has shrunk so much I might get away with fewer but dr. says no. We'll see if my body can take it. Today was another rough day - weekends tend to be when my body rebels against the chemo. Feeling bit better now after a bowl of chicken soup and crackers.
Hope everyone else is doing ok.
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Good morning Marla. I'm following with great interest since I'll be going through the same process in about 2 weeks for my lumpectomy which is scheduled for the 14th of March. Currently nothing in lymph nodes based on MRI, but we never know for sure. Prayers no cancer cells found in the Sentinel lymph nodes.
I have my Herceptin and Perjeta targeted drugs infusion tomorrow. Done with the docetaxel cytotoxic chemo drug. Hopefully no severe side effects since we're not sure which drug(s) caused all of the problems. No more Neulasta either which has it's own set of side effects. This will be my last infusion of these targeted drugs for the HER2+ protein until I return from Mexico and start radiation treatment. This assumes no residual cancer is found and results given in Pathology Report. Fingers crossed on that. I finally broke down an bought a Hanes light support sports style bra for post surgery. No wires. No compression. I haven't worn a bra in over 15 years. Only camisoles. Will see how long I can tolerate this. I suspect not very long! Lol.
I hope your surgery goes very well and not too much pain. My doctor said about 2 weeks recovery for this surgery. Take care and let us know how it goes. I'm sure we'll have notes to compare on our experiences and outcomes on the lymph nodes. FWIW, you may want to ask your surgeon for a referral to PT for your shoulder area and arm pit due to lymph nodes surgery. My neuropathy PT says she'll work with me on this after my surgery to loosen up/exercise the muscles etc.
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Good to see you Roc and pleased that both you and Marla can share your similar lumpectomy journey. That being said, Marla hope all is going well after your operation. We know Love is progressing back into the work force and hope Sadie is doing well.
Had my 7th chemo today and they seem to be getting quicker even though I'm not out of the whole process any earlier. In fact today was longest when including lab work, doctor visit and chemo.
I am very pleased with my new Physician's Assistant and in fact had four topics to discuss that developed just this week. Will share because want to be open to all, yet the first one is one I'd wouldn't usually share openly : )
Because of constipation, I have developed a fissure in my urethra that begins from the vaginal area. Because of the constant movement, push and pull in that area, and my low red and white blood cells, I am quite concerned it will be very difficult to close. My home remedy is sitz baths and Aspercream with lidocaine. Today I asked my PA if we could possibly use surgical glue to close the fissure but she did not feel that would work. I was surprised when she asked to examine the fissure. I guess because she works as oncologist she'd just refer me to a GYN or something. She said it looked good and to proceed with what I'm doing and we'll check it next week.
The second and third items were rashes. The first are small red areas appearing on my forearms, and she prescribed a cream to start using. The other rash is under my breast and on the chest area of breast. Turns out this is a yeast infection that I have a different cream for. To be honest, I have not been checking under my breasts so it covers a good amount of area. I've also been wearing a bra for the last year or so, 24 hours a day. Never went without one because it kept the pads/bandage in place for the tumor. The reason I noticed the rash now is when I wiped under my breast as entering the shower there was a lot of moisture there. The moisture also had a distinct odor which I was attributing to the tumor. So ladies, check under those breasts sooner than I did : )
The last item is the continuous urge to urinate even when nothing to eliminate. We mentioned a urine sample, to check for UTI, but honestly, we both forgot to get one. As I had just eliminated about 15 minutes prior, I also had mentioned probably couldn't give sample right then. I do have a home test I will do.
Sorry if you're feeling TMI but I do feel this is one of this board's goals. To share our different/like journeys.
The PA did not really say if chemo had any direct bearing on any of these. Doubt the fissure is from chemo other than the constipation it causes. I have started taking a stool softener ever night. Caught me by surprise as I usually have diarrhea with my cramping. The yeast rash is not being aware this could happen and constant wearing of a bra. Full feeling may be UTI. So arm rash only thing without another explanation.
Thanks again for your patience. Love ya all.
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Hello ladies!
I figured I'd better say something or else you guys are going to think I fell off the edge of the Earth LOL.
I am doing well on Xeloda. At first I was having a little bit of nausea after I took it but then I started taking it during my meals and I have not had any problems since. I'm very encouraged by that. On the flip side I seem to have lost my balance and then therefore. I am back on the Walker and will be getting a wheelchair this coming week. I'm very surprised how much I lose my balance and don't quite understand why that is. I'm also getting double vision which is kind of fun when you're trying to pick which button it is on your phone you want to hit lol. I had a brain scan done Friday which was just a tri-monthly checkup that they run same as the pet Scan. I will have those results next week. If I don't see anything in the results I'm going to get a hold of my oncologist and ask her what she thinks is going on with me. I'm sure there's someone on the team that can take a look at me and figure this out. It's the one thing about having a really big team you may or may not see everybody that's on it. But they have their weekly meetings and go over everything in their departments so that everybody is up to speed for as the patient is concerned.
We've had a few bites on our house as far as showings go. We're just waiting for all this to go through before we decide where we're going to move to. It's too much to add to our plates right now with everything else that's going on with me. My husband is exhausted and I'm having issues with not being able to wake up. I'm always sleeping. I can understand some sleeping because your body is fighting this cancer but I don't get sleeping as much as I do. I'm really out in third Field trying to understand all this and knowing that it's beyond all my research that I've done so far on this board.
I love reading your blogs! Please keep them up, I know I have not been on for a while but I also have a lot of issues that I am trying to deal with. I really shouldn't use that as an excuse since this board is for people to be able to see as an example what we all are going through. Every one of us is different but there are gems in these blogs that I greatly appreciate.
BTW I also had a lumpectomy in 2013 for breast cancer on the opposite side of the cancer I have now. What I'm hearing from all of you are basically the same answers I was given for my lumpectomy. My oncologist explained to me that even though it looks like we got everything and that my sentinel node was clear that there may be residual cancer cells in my body that are just waiting for a signal to fire up again. That was exactly 10 years ago and totally different cancer type (HER 2+). My oncologists were a little surprised because it's not normal to have two different types of cancer. The other odd thing about triple negatives is that it happens to women under 40 years of age and Black or Hispanic. I don't fit into any of these rules. The other thing that I don't seem to fit into is the fact that triple negative being as aggressive as it is should start covering areas that has gotten hold of. For me this metastases consists of only little Islands that have not spread. I sometimes wonder if I have something in my system that can be used to help others who find themselves with triple negative. It is a conversation that I want to hold with my oncologist at some point.
That's it for you now. Claoh please keep me informed about your walk. I miss hearing from you.
Hugs
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Wow! I am so with you in your last paragraph!!! I have the same thoughts about TNBC, just waiting for the right time and place to show up!
Glad to hear from you, I was concerned that you "fell off the edge of the earth!"
I had my lumpectomy on Feb 28th with my first post-op on March 7th. There was a large seroma in my right breast that was drained of about 1/2 cup of old blood and fluid. They wrapped my chest with an ace bandage to compress my breast to the chest wall, well that was a mess. Kept riding up and down, separating themselves from each other. Thinking about how to compress my breasts against my chest wall to let the tissues reconnect to each other. The fluid forms between the layers of muscle and fat that allows it to NOT heal together. Any ideas anyone?
Will post again soon!
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Where was the tumor located that a seroma formed? I hope that doesn't happen to me. My tumor is away from the chest wall within the fatty tissue of the breast. I'm scheduled to leave for Mexico a little over 2 weeks post surgery so I hope nothing goes wrong. Did they find it using an Ultrasound? What were the symptoms? What did they do to drain it? Sorry for all of my questions but this has me concerned given my upcoming surgery.
So sorry you're having this problem. Hope you have a positive-good pathology report. I'm praying mine comes back with clean lymph nodes. I get the report and meet with my Oncologist just before I leave for Mexico for 3 weeks. A much needed mental health break.
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RocdocVic,
As I understand it, the body does not like empty spaces and will fill them with fluid. The seroma was above the tumor site and looked like a small orange in size. It did not hurt but felt weird. The seroma was in my right breast after surgery and the Dr. used ultrasound to locate the fluid areas which appeared as black holes on the screen. This area was drained with a needle and syringe and she removed about a 1/2 cup of old blood and fluid. She numbed the area so I did not feel anything, but I was a bit sore the next day. The lymph nodes were clear and only a few cancer cells remained. Dr. said that the radiation would take care of those cells. I have another appt with the surgeon on Thursday the 14th with my surgeon to see if they need to remove any more fluid. In the meantime, I purchased a sport/compression bra that I wear 24/7. I go back to the oncologist on Friday the 15th to get an overall explanation again, which will be great. Don't think that I will need any more chemo. I did have genetic testing done last June which showed that I have the PALB2 gene mutation. Since that was a while ago and memory fades, I will have another appointment with her this week so I can better understand what all of this means for me.
Other than that, healing is going well, incision site near my armpit seems to be the most irritating and painful. Now just doing my stretching and arm exercises. Oh, and my eyebrows and eyelashes are making their return! Have a nice fuzzy head of hair, just very very short for now. Hope this helps you RocDoc!
Talk soon ladies
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Thank you for the information Marla. Most appreciated. I sure hope that doesn't happen to me because I'm supposed to fly to Mexico a little over 2 weeks post surgery although I do have follow-up appointment with my surgeon 1 week after surgery. If need be another visit just before I fly down maybe. Just don't want to have to deal with it in Mexico or postpone my trip.
My PT has been giving me some exercises I can do after surgery so this should help before I start radiation when I get back from Mexico.
I think DNA and genomics testing of tumor will help should additional treatment be needed. This can also be used for liquid biopsies if residual cancer is found in the lymph nodes. Monitor circulation of cancer levels in my blood. Hopefully none is found or levels are so low radiation treatments afterwards can take of it. I'm just worried about spread and metastasis to other areas. My cancer type, HER2+, has 50+% spread to the brain vs the liver, lungs or bones.
Take care and let us know how recovery is going.
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Hi ladies
Tomorrow will be my last day of the first course of chemo. I'm very grateful that I have had no side effects with this new pill. I am getting a little bit tired but I find it interesting that it only is starting to feel that way when I'm at the end of this treatment. After this I have one week off and then I'm back on it again for two weeks. It definitely beats chemo in my book. The chemo really ripped me apart including the hospitalizations that I had. I think I'm headed in a better way now.
Claoh I just want you to know that what's happening to you is just as important as what's happening to everyone else on this site. There is no greater than or lesser than here. We are all walking the walk and as friends it is good to have someone like you who helps encourages and prays for us. I do believe your prayers have touched a lot of things in my life and I can't tell you how much I appreciate that.
As far as the DNA goes, there are some that have DNA flags and some that don't. I'm one of the ones that doesn't. There is nothing there in my system that says this was what it was that fired up the cancer. I've had a ton of these DNA tests of different types and there really is nothing. I just wanted to let you know that so that if yours comes back with nothing then that also is just a part of it.
As far as the radiation, after I had my lumpectomy I went through 6 weeks of radiation. At that point my treatment was complete. I remained cancer free for 10 years. My first cancer was a HER+, a ductal carcinoma in situ. My sentinel node was clean. Just another thing that makes my oncologist wonder how I came to have triple negative.
I had my brain scan and I'm waiting for the results. I have a video conference this Thursday to go over the results although at Cleveland Clinic when you get a test done it is automatically posted. I looked it over and saw nothing there so that is another happy step in my walk. That will be two scans now that has shown negative for cancer of the brain. I'm really impressed with the gama knife surgery they did on my brain when they first diagnosed the cancer that was there. It was a simple operation that left no residual symptoms. I wish everything would be that easy LOL.
Not much else is going on right now. Still waiting for the house to sell. All you ladies take care of yourselves. Find something that makes you happy and do it, including Mexico trips. :-)
Y'all be blessed.
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I've read that sometimes HER2 + changes over time and becomes less positive to the newly designated category of HER2 Low. It can also become triple negative. Ah the mystery of cancer and cell mutations. I find the whole issue of using DNA, RNA and genomics of the tumor fascinating because this can then be used to decide which treatment may work best, as well as monitoring for circulating cancer cells before cancer shows up on PET and CT scans. I know someone who has colon cancer where his Oncodoc uses it via liquid biopsies- blood samples. They saw signs of cancer cells based on the tumor DNA/RNA and genomics, and then found it on a later PET scan. He's having additional rad/chemo for the hidden cancer. They've approved this testing for metastatic breast cancer or cancer of Stage 2b and higher if on Medicare.
An interesting statistic I came across is that HER2+ is one of the cancers likely to be recurring. Of those that do about 50-50% are brain cancer if it spreads beyond local/regional - same breast or the other breast. My Oncologist has never discussed this, nor overall survival so another thing on my list to discuss with my Oncologist. She's not very forthcoming with information either. The more I read the more disappointed I am with my Oncologist. I don't think she's up on the latest testing and drugs either.
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Hello, friends! I'm so thankful that you share here when you can. I can't believe it's been a couple weeks since I have participated in this discussion.
Today is 11 weeks since surgery and next Friday is the 1-year anniversary of my cancer diagnosis. To say this past year has been a blur is an understatement. I still have a couple small incision areas that have not fully healed and at OT yesterday, she found a couple more "spitting sutures" still making their way out. It's frustrating but it's going to take as long as it takes. Next post-op is Tuesday but I'll be seeing a different PA than usual. So, I don't think the topic of revision will come up until my regular PA is back from vacation. I don't feel ready to discuss revision and feel anxious every time I think about it. I know the surgeon and his staff are thrilled with how things turned out but I'm very aware that reconstructed breasts, even using your own tissue, aren't really breasts. And the lack of "anatomy" makes it doubly hard to accept them as breasts. I don't feel like I can even start to accept them until I can do the medical tattooing but if I want tattooing, I need to be done and healed from all the surgeries. If I don't feel like I can decide if I want any revisions before seeing them with the tattoos and I can't do the tattoos until after any revision, where does that leave me?! Hence the anxiety.
I think I mentioned previously that I started seeing a psychiatrist. She's started me on meds that I think are really helping. And one of them has significantly reduced the number of hot flashes I'm having! That was unexpected since it's a medication for depression. So nice to have a positive side effect from a medication for once!
I've finished three weeks back at work now. Things are going a bit better but it's hard to accomplish anything beyond work most days. Tomorrow, my husband has his first free Saturday in a while and we may take the opportunity to go to DisneyWorld. But it's already getting hot here in Central Florida so we may need to play it by ear.
Sorry I'm all over the place tonight! Hope to hear updates from you all soon!
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Hi Love, so glad to hear from you and glad to hear work is getting a little easier. Still so many questions on what to do. I always say to others "this is for life", even after the chemo and surgeries. The constant checks and being on guard. I do appreciate our support group.
I've had a few more very pleasant days as my chemo was rescheduled from last Wednesday to this coming Monday. Was exposed to a slight risk of covid and dr's wanted me to wait to see to see if I got sick or not. Have taken two tests and still negative so that is good.
Warm thoughts to all.
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Quick update. I had my lumpectomy on Thursday morning. All went well. My Surgeon was able to locate 3 Sentinel lymph nodes for collection and testing for cancer. She removed the tumor and extra tissue to make sure she got it all. Boy with 2 incisions, one across my left breast just above the nipple and the 2nd one in my armpit area, the swelling, bruising and pain are noticeable. Using frozen peas and corn bags to ice everything down and taking Hydrocodone and ibuprofen for pain and inflammation.
I see my surgeon on Friday for check-up. Hopefully the pathology report results will be ready when I see my Oncologist in 1.5 weeks. Fingers crossed no residual cancer found. Then off to Mexico for 3 weeks mental health break and recovery trip before radiation therapy.
Hope everyone is doing well. Take care.
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