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Glad to hear from you Love!! What an adorable little pooch you have.
Like Marla, I was overwhelmed with the next three weeks requirements after your surgery. Hopefully, you have some friends willing to come in to assist in some matters?
Marla, great to hear from you again also. Hope the neuropathy continues to diminish for you.
As for me, I do think I'm seeing a slight uptick in internal cancer. I mentioned the UTI test, and that came back negative a couple of days ago. Now, the last two days I am having some unexpected, urgent urges to eliminate waste. After doing some research, I think I may be starting to deal with bladder/kidney cancer issues. That would explain both the eliminating and burning sensations. I've noticed the slightest evidence of a little blood on tissue also. It's all in the baby stages, but something to keep a watch on. I believe Monday will give us some concrete evidence one way or the other.
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good morning,
Going to report that I now have COVID on top of everything else. This will make 3 weeks without chemo.
I just feel like I have a bad cold.
Everything else remains the same. Depressed at the moment.
One day at a time.
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Okay I think it's crazy that y'all are getting the same thing I already got... Almost anyway. Marla im sorry to hear you got covid That's the problem with chemo - it makes it easy for us to catch something. You have to be wary of everything, like not eating at buffets or salad bars to being around people who could be carriers of this stuff. I'm glad you didn't get Covid/pneumonia though. And Claoh I just went through a bout of a severe UTI. I'm so sorry for the both of you! I wish neither one of you had to experience this stuff. As far as testing negative, the nurses told me that you can test positive for the next two to three months even though you are not infectious/infected with covid. Marla did they give you anything for breathing? Did they give you Remdesivir?
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Good morning, No the Dr did not give me Remdesivir because we don't know when it all started since I had a stuffy nose for a week before I tested positive if that makes sense. I either caught it from going to the market or the lab office. Haven't been anywhere else. I tested last Thursday and the oncologist said to skip Friday's chemo which would have meant that I skipped two weeks of chemo and then come on Friday, Jan 12th. Which meant 3 weeks with no chemo. The good thing is that some of the neuropathy in my hands and feet has subsided. Still feel like I have a bad cold right now. So far still testing positive.
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Marla I hope you get better fast. Covid is horrible! And for you to have to deal with it on top of everything else! That was really cool about what you said concerning your neuropathy. I keep praying that once your chemo is done that will go away and you will never have to deal with it again. It sounds like that may happen based on what you said which would be awesome!
Prayers headed your way!
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@LovesPrimes I was trying to figure out how to personally ask you how you were doing post-op, as I knew you'd had your reconstruction surgery delayed a few days and then I'd gone into radiation treatments and susequent appointments. I'm so glad it was a successful procedure, but sorry you're in discomfort and for yours and your husband's juggle with all of this.
Zoey is absolutely precious, and I can relate to how empty one's home feels after caring for pup family members their whole lives and the loss that inevitably follows.
The details of your fur-babies' traumatic passing unknown, I'm honestly shocked by the similarities of our circumstances: I too (well, I and my now ex-husband) lost our 2 rescue dogs we've had for 15 and 13 years within weeks of each other in early 2023. I couldn't imagine life without them, and now that I no longer have the companionship of my ex OR my babies, I understand fully how insufferable it might have seemed to have gone through this temporary derailment without dogs to put your attention on and their unconditional comfort in return.
Kiss Zoey for me. You're so fortunate to have both her and your husband's company. :)
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Thank you, all, for your good thoughts and prayers. I truly appreciate you thinking of me/us.
This past week has been tough. I was in a lot of pain but Wednesday night went to a new level. Since then, I feel like we are doing a much better job "staying ahead of the pain" but still have had some issues, especially later at night. I'm not getting much sleep, the very thing that would help me most.
We had my first post-op today, which was also my first time leaving the house since coming home from the hospital. They continue to say everything looks good. I've got a watch area under the left breast. They removed the wound vac from my abdomen, which was a HUGE deal. I'm no longer tethered to a machine that I have to strap to my walker or have by me all the time. They also removed both upper drains. I thought they might remove them all since the lower ones are leaking but, according to them, they're still pulling enough fluids out to warrant staying in at least another week. They are the hardest ones to deal with, especially so far as wearing clothes (they are really low on each hip) but I understand.
We're under threat of tornadoes here in Central Florida just as we are expecting a West Coast friend's flight to land in the next hour. Praying she gets here safe and sound. She will only be here for a few days and I wish it was a pleasure trip, but I'm so looking forward to seeing her!!
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Glad to hear all is progressing well Love and will continue to keep you in prayers to improve each and every day. Hope your friends flight wasn't delayed.
I had my PET scan yesterday and it seems to have set me back (?) a bit. First off, I was much more claustrophobic than the first time (when I was healthier). Even called out once asking how much longer. Seemed a lot longer than 15 minutes.
This morning woke up with slight numbness in left hand, fingers. They had me have my arms over my head for the test. Did some nerve exercises I got from on line and seems better. This evening my pads had blood on them so wondering what to do. See the doctor at 1pm on Thursday so if it doesn't get worse will just wait to see him. Otherwise, may go to the hospital because of the bleeding, but hate to do so. Another wrinkle to the mix when so close to decision on tumor.
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Morning ladies
Lovesprimes in case you haven't figured it out yet, I'm the curious one. So I have a bunch of questions for you that you don't have to answer if you don't want to. :) I was wondering if they helped your pain levels by increasing your pain pills or did they add a different type of medication? Really stinks that you have to be in so much pain. Did they give you medication for just a few days or do they continue it until you're down to an acceptable level? Without my palliative care doctor that's what I would be afraid of. I can take a lot of pain but I'm sure it's nothing like what you went through. My next questions are about wound vacs and watch areas. I am not familiar at all with dreams where they exit to or anything else about them. I only happen to read about them on another website but it really didn't go into detail as far as what has to happen. I will be getting mine removed after I can go 6 months without any more metastases. So I would really appreciate it if you could give me a little insight into what that's all about. I tend to get nervous when I'm faced with an unknown, but again if you don't want to answer you don't have to. :)
I hope your friend made it in yesterday. Did you have any damage or did the tornados skip over you?
Claoh I totally understand claustrophobia when it comes to those pet scans and the MRIs. I am very claustrophobic and have to take medicine to keep me calmed down. Also - sounds like you're running across a lot of decision-making right now. Keep us in the loop as to what you're thinking, I so appreciate it. I offer you my prayers for your peace, comfort, and wisdom as you go through this trying time. They should also be able to give you an idea as to where the numbness is coming from.
Marla I was wondering if you were experiencing shortness of breath from the covid. I got mine the first of November and I'm still dealing with that and coughing. I've talked to others who seem to be having the same symptoms I am but wondering how you were doing. Again so sorry that you caught that covid. It can be done right now nasty.
So I'm writing this between my PT and my nurse followed up this afternoon by my OT and d don't want to get too far ahead of myself so I think I'll stop here and try to catch up to all you fine ladies later on
Hugs and prayers for all of you.
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Well, I just got back from the oncologist appointment and have a lot to process. Apparently, my pet scan came back with no evidence of cancer growth anywhere in my body from the original scan 9 months ago!! The only growth is this tumor outside my left breast. So to get rid of this, we are going to a lower dose of 4 of the 6 original drugs plus Keytruda for the next 6 months. Then determine if we do surgery or not. Yes, you probably need to read that again as I still have trouble processing. I really expected to be full of cancer from the pet scan, even though I keep saying I can't feel anything different. Kept rationalizing that if this has grown outside, must be a lot inside. Still don't know why the diarrhea lately either.
So I will be joining the regimen of the rest of you. As I mentioned before I feel this leaking tumor is a greater evil than the chemo. It is very hard for me to write that as I review your posts and see what you've gone through.
I will probably start in a couple of weeks, or as soon as I get a heart ecogram and ok from the insurance.
I have a cancer chemo clinic next Thursday.
Can't think of any more to say. Still processing.
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WOW is all I can say! Speechless as I am sure you are too! Amazing things do happen and why we don't know. I am glad that you are going to do some chemo at least.
I Look forward to your thoughts once you have processed this information.
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Hello, all! Thank you again for prayers and good wishes. My friend's flight was only delayed an hour and I'm so grateful to have her here. She's currently picking up our daughter from work and in the process of making baked potato soup for us.
@claoh I am ecstatic for your news! I know it's a lot to process but so thankful for the absence of cancer in the rest of your body.
@marlakeeth I'm so sorry you're dealing with Covid. That really sucks.
@LifeInBloom100 Thanks for checking on me! Yes, we lost both our rescue dogs close together. We had only had them a year, so nowhere near as long as you, but the trauma came from one killing the other. She didn't mean to; she was defending herself. But we couldn't keep her after that and honored our agreement from adoption that if we ever couldn't keep her, we would return her to that rescue. The one that was killed was smaller but, a couple months before this happened, she developed some mental health issue where she would viciously attack the larger one. We had seen the vet and gotten her on medication, they spent a month apart in our home, and as prescribed we slowly brought them back together and thought the issue resolved. I will never be able to forgive myself for not putting the gate between them when we left the house that afternoon. I still have nightmares about the sights of everything when we returned. I'm going to start weeping if I relive it any more. So, I'm going to post a pic of Zoey in PJ's she got for Christmas.
@Sadiej Please ask whatever you want! I'm just not always good at explaining things, especially medical. I knew that "vacuum assisted closure" was part of the surgery plan but didn't really understand things, at least partially, until after surgery. My abdominal incision is hip to hip and was heavily padded and taped down with a tube coming out of the left side that connected to a tube coming from the hospital vac while I was hospitalized and then transferred to a smaller, more portable one when I was discharged. I heard it called a "negative pressure vac" by a nurse and that makes me think that instead of sucking it was applying pressure to the incision area to help it close? The one at the hospital was on my IV tree. The one I brought home had a strap I could use on the walker or I could just set it on a side table while on a recliner. It had to be charged every night (while still connected to me). The surgeon's office disposed of it after removal. Said it can only be used for one person. Let's see how much they charged insurance for that!! I'm so sorry that it sounds like you have yours for so long.
The "watch area" just means a small area under the left breast that isn't healing as well as the areas around it. If it gets worse, they need to know immediately. For now, we watch and see and my husband puts extra prescription antibacterial cream and bandages on it.
For pain, I'm on gabapentin, methocarbamol, and 800 mg ibuprofen. I call it the pain trio. For "rescue med", I'm taking tramadol. Supplies are getting low as I approach two weeks since surgery, but, if it's like the mastectomy, I know they will work with me to get more until OTC meds are sufficient. I probably need to be less prohibitive about narcotics. There was a lot of addiction in my family of origin, so I tend to be overly cautious with that kind of stuff. Those first twelve hours, when I had a morphine pump, the nurses kept commenting how little I used it. Said they had patients that would press it 50+ times an hour. I felt like I used it a lot but apparently not.
I had been confused why the upper abdominal area, below and above surgery areas, was so painful and tender to the touch. Lo and behold, I saw on a post-op note yesterday that during surgery, they removed two of my ribs!! I had no idea.
Well, here is the promised picture. Hope it makes us all smile (even though she's not thrilled about it!!) 🤣
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Good evening all. It's been quiet on our board! On my side, I feel some urgency in finding a wig within the next two weeks before I assume we'll start chemo. Any suggestions. Marla, did you try the "cold cap"? Looking back at your experiences, what would be the first "word of wisdom" you'd pass on to me.
Loves, I don't know why but I've been a bit reserved about approaching you for a possible "meet up" as we both live in central Florida, and I suspect we may be getting treatment at the same facility. Don't know if we'd be breaking any rules of this website : )
I was shocked to read you found out two of your ribs were removed after the surgery. That seems rather important!
Take care and sending my love and hugs!
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I've used a cold gel cap for my chemo. Mostly for Taxotere since it can cause permanent hair loss, but also for Herceptin and Perjeta. They're gel inserts which go into a gray color fleece type cap I found on Amazon. I put the entire cap into the freezer in a plastic bag the night before and they have a freezer/fridge at the infusion center until it's needed. I also use gel mittens and booties to minimize neuropathy.
My head is shaved because my hair was starting to fall out. No wig, but I have several fun chemo caps/hats from Amazon that color coordinate with many of my clothes. The good ones run ~$20-$30, made of bamboo and cotton.
Hope this helps.
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Hello ladies!
I know I should get on these boards more often! Claoh your news on your PET scan made me so happy! That is so great! Plus the fact that you only have to do 4 treatments instead of 6! I went through 12 treatments before my body finally rebelled on me and ended up with my two hospital stays in November and December. Still recovering from it all. In fact, I plan on getting with my doctor about the possibility of my having hypersomnia because all I have been doing is sleeping 24/7 for the last few weeks. For anyone who is curious, here is the link:
Hypersomnia During Cancer Treatment - https://myhealth.ucsd.edu/YourFamily/Women/34,18342-1#:~:text=One%20side%20effect%20of%20cancer,Hypersomnia%20is%20different%20from%20fatigue
Again I apologize for such a long hyperlink.
On another note, I got one of those caps that Marla suggested. It really helps with my headaches. Glad I got one! :)
Lovesprimes, thank you for your explanations. But I am a little curious about why they would remove two ribs. Is that common procedure?
Marla hope you are feeling better. Do you have to stop all treatment until you recover?
Seems we are all on different paths but headed in the same direction.
Be blessed ladies!
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Glad to hear from you Sadie, was getting a little worried.
Need to clarify. The lower number is relating to types of chemo. Originally, they wanted to use 3 each time with keytruda and this time they are using two plus Keytruda. Still a total of 16 treatments. So, I really didn't gain much by not starting sooner, but that was not where I found peace. This outside tumor has changed everything! Don't know how they'll do an ecogram of heart with this tumor on my breast.
My doctor switched me from oxycodone to morphine which I had tried earlier and did not like. Already feeling a bit more under the weather and pain not covered as much. He did give me a low dose of oxy to supplement with so will try that later today.
Take care all.
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@claoh , I'm hoping the morphine is working for you. I had the opposite reaction: oxy caused me to have dark thoughts and dreams so badly that the pain relief wasn't worth it. In the hospital, the morphine pump was perfect and the nurses were surprised I didn't use it more. But the small doses more frequently worked great for me. Then they switched me to oral morphine; that worked okay but mostly knocked me out for a couple hours and I'd wake up in pain again and have to wait hours for another dose. So, now my rescue med is tramadol and I've mostly used it late at night when the pain is at its worst.
@Sadiej It all depends on location of vessels. Since DIEP involves not just transfer of fat but of tissue and vessels as well, they had to remove a rib on each side to get access to my mammary vessels.
Second post-op was today. They continue to say things look good but both things I hoped for didn't come to pass. Still have two drains. Still have to get help getting out of recliner. (Latter because I'm only 18 days post-op and abdominal incision still very vulnerable; apparently, they closed multiple layers there.) I'm also supposed to wear an abdominal binder 24/7 now. Struggling to get used to it but it is helping with the pain above the umbilicus.
Really enjoyed having my friend here but she went home Sunday. I'm back to watching copious TV/movies and reading a little bit when I have the currently rare attention span to do so. I'm also realizing that although I'm a little over 1/4 of the way through time off work, I'm much longer away from being recovered. I stumbled upon a website for someone else who chose DIEP after breast cancer. Only poked around a bit but really appreciate her "keeping it real" and blunt honesty. In case anyone else would benefit from it, the website is https://nancyspoint.com/
I'm feeling distressed about disability from work. The third party administrator wants further documentation from surgeon's office for medical necessity like current treatment notes. But I get copied on those notes and they include pics they take of my surgical sites. It feels so invasive and wrong to require that level of documentation to approve my short term disability.
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Such a cute photo. Can tell Zoey is really a wonderful companion for you through this Love!!
Yesterday my husband and I were commenting on how far medicine has "advanced" in 100 years. The drugs we use and procedures we have to extend our lives, both with quality and years. One hundred years ago individuals would just have to cope with their situations for the rest of their lives, even the pain. Doesn't make it any easier, but there is a light of improvement at the end of the tunnel.
Got a call yesterday that my chemo will start one week from today. Need to go in first thing this morning to get the ecogram. Tomorrow I have the chemo clinic and hope to do some wig shopping. As much as I didn't want this road, it is also a relief to move forward to get rid of this tumor outside my breast. As you can tell, my spirits are a little higher today.
You all have gone through so much more than me, and I appreciate all your input and support. I hope to draw on the strengths you all have exhibited.
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