Starting/declining hormone therapy Nov, Dec, Jan 2018
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Anijo - glad you found something that works for you re: hot flashes!
Spoonie - here’s a Friday Finley pic for you with Domino and Tucker. He’s starting to learn from the pack.Thinking of you!
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Finley looks sooo tiny in this picture!
Spoonie- Thinking of you as well. I hope you are having a restful day
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Dani - he’s little but growing fast! See below
Spoonie - today you have an appt right? Thinking of you and hope it goes well.
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Thanks dear "Squad"
Appreciate the furbaby updates and well wishes. Tucker will be the tiny one for quite awhile I think Pebbles!
Surgery is scheduled. Will be getting a full Thyroidectomy on Dec 4th. The procedure itself takes anywhere from an hour to 2, depending. However, my sugeon apparently has done over 11,000 of them so he's very sure I'll be going home that night after a few hours in recovery. That's good to know. I hate staying overnight there, you can never get any sleep.
My parents are going to come stay with me for the day or 2 afterwards to make sure I'm adjusting well and able to do what's needed on my own without too much pain or nausea before heading home themselves.
Have to say, I'm nervous. Both my PT and my Surgeon say my risk for pissing off my Breast Lymphedema is low, as long as they don't have to take any nodes. But if they don't take any nodes, like they do with breast cancer, then how the heck do they know there isn't cancer in them? It seems so strange compared to my last cancer fight.
I meet with my Primary on Wed for my Pre Op physical. Lots of questions for her, namely, why the heck doesn't my surgeon feel that getting a up to date US or CT or MRI of my neck would be helpful prior to surgery? Seems like the ones from 3 and 6 months ago should be at least double checked against the current state of things in my neck given all my continues symptoms of pain, itching, pressure, burning, aching in my clavicle/neck lymph nodes. I am now even bleeding from my R ear occasionally, with pain and tingling that goes across my face from my ear and my eyesight continues to be doubled. It hurts to talk, it hurts to swallow, and it's only worsening with time. It's all very stressful. Especially since surgeon says none of this is likely due to this new cancer, yet I've had this all going on and continuing to increase in severity, back since June.
I'm hoping my Primary will order a CT of my neck or maybe fingers crossed a PET Scan just to rule things out and put my mind at ease. With the year I've had, my anxiety is just a barely contained beast. I'm sure you all know what I mean.
My brother, who has had Thyroid Cancer twice, has had THREE Pets in the past 10 years. Would just like a baseline you know? Especially since my MO has said there are no further Endocrine Treatments available to me and as mentioned in part of a NCCN guideline for Breast Cancer imagining "when stopping treatment" or "beginning new therapy" a PET Scan may be done. I think without any viable ways through meds to reduce my recurrence rate from 28-35%, I'm gonna ask and ask until someone listens.
I swear I just want, even if there may be false positives, peace of mind while I start healing from this next surgery. I don't want to wonder why these other symptoms are getting worse and think it's more cancer. I'd rather just be able to trust that somehow that's all related to the also new dx of MS from September. Know what I mean?
Anyway, it's chaos here and surgery will be here before I know it. Gotta head to bed and wake up early to take my little Ari to the vet. She's not eating well and losing weight. Hoping it's nothing serious. Will be back to update ya'll, on me and the cat, at some point before surgery I'm sure.
In the meantime, you are all in my thoughts and hoping the transition to winter is going as best as it can given the "snowy" circumstances. Gentle hugs to you my friends. May the sun keep you warm even when snow falls. ,#
https://www.nccn.org/professionals/imaging/content/ (free to get an acct)
"Baseline imaging prior to the start of new therapy. Studies of functional imaging, such as radionuclide bone scans and PET imaging, are particularly challenging when used to assess response. In the case of bone scans, responding disease may result in a flare or increased activity on the scan that may be misinterpreted as disease progression, especially on the first follow-up bone scan after initiating a new therapy. PET imaging is challenging because of the absence of a reproducible, validated, and widely accepted set of standards for disease activity assessment."
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Hoping all goes well with your surgery. I had my right side out first no nodes. Then when right side came back positive they removed left side and 2 nodes and some additional tissue which were negative. For a few days it was difficult to move my head up down and left to right and the doctor wanted to limit the motion. I ate a lot of soft foods for a few days, more solid food made me cough after eating. Other than that recovery was much easier than BC. Over a month later they did a neck ultra sound to see if they could see any additional cancer, that was clear. Now I have radioactive iodine scheduled for Dec 18 then on the 26th a scan to see where there is any additional thyroid tissue and possible cancer.
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Spoonie, sending you so much love and encouragement.
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RrShannon - wishing you the best with the Iodine txt and the follow-up scan. May it all be clear. Thanks as well for sharing some of what your surgery and recover head entailed. I appreciate. Gives me more of an idea of what to expect afterwards. Keep us posted on how things go.
Edj3- Thanks for the love. How are you doing? Has your heart settled back down yet? Are you off of Tamox completely now? What are the next steps for you? Hoping those scary symptoms have disappeared for you.
Also....can y'all keep my pretty kitty, Ari, in your thoughts? We've been at the vet alot this week. She's back with techs right now for xrays. She hasn't been eating right for the past 2 weeks . And then she started acting not herself and hiding more. And then this week she refused to touch even her most favoritest of treats and food. That's when I brought her in and Labs came back a little abnormal but they couldn't find anything to explain why she wouldn't be eating and why she would be throwing up in the labs, so x-rays. The vet is talking about pancreatitis or maybe a blockage in her intestines somehow or possibly cancer for congestive heart failure , just a lot of scary things he was mentioning. And just in the past day and a half since we were here for labs she's lost a pound and a half. I was bottle feeding her basically last night just liquids so she would have something in her. I'm really scared for her .she's my baby. At least Im not stressed about me since I'll worried for her. I'll keep everyone posted. 4 years ago I lost my 14 year old Maine Coon to brain cancer so now Im hoping that's not where Ari is heading too.
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Oh kitty, no. ALL the love and healing to your Ari!
I'm off tamoxifen, still have to have the heart scan (12/4) and insurance won't certify the stress test until after the heart scan . . . next earliest appointment is of course next year. Hello all new deductibles.
And I feel a little spoonie-ish myself. Apologies if I'm repeating myself in this thread, don't recall where I shared (probably steam room), but I had a lump removed from my arm in October. My derm thought it was a dermatofibroma , but of course it's not. It's an atypical leiomyoma only wait, there's more. Not only is that kind of tumor exceptionally rare on the skin, MINE has more weirdnesses. Here's an except from the path report:
The tumor shows an increase in the number of nuclei and extends into the subcutaneous fat with focal deep margin involvement which are are features of concern and are unusual for typical banal leiomyomas. Complete re-excision of this lesion is recommended for further examination.
I was originally scheduled to have that re-excision on 12/12 (the first available appointment) but I called yesterday and asked if I could be on their cancellation list. She was skeptical anyone would cancel but they did! And now I'm having my arm sliced and diced at 10:30 this morning.
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Oh my goodness! I did not know that. You poor thing! You're in my thoughts this morning. my fingers and toes will be crossed that the biopsy of your arm comes back quickly and that somehow the pathology is something that can be treated without issues. I'm very thankful someone cancelled today. Please keep us posted! Many hugs and spoons to you my friend! You need them too.
In regards to my kitty, she needs an ultrasound. They found something wrong with her stomach. They can't determine what it is on xray. It didn't look like an object and he had 3 other vets look at it as well. Their consenus is possible Lymphoma! Omg. Thankfully there was amazing timing here too today and their once weekly ultrasound tech will be here in about a half hour. I'm hopeful it's something other than Lymphoma. Maybe it's just a different mass, something abnormal with her stomach that can be treated with medicine. Oh my God I'm stressed. I'm really trying to hold it together. So worried about her but so glad that I brought her in. I should know about the ultrasound results by Noon.
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I'm holding YOU and Ari in my thoughts. You know I love my kitties just like you so I'm going to be holding my breath till we know the deal with her tummy. ❤️❤️🧡
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The news isn't good.....Im devastated and heartbroken.
They're pretty sure it's gastric lymphoma. They're sending out biopsy slides of her liver. we should get the results in 2 to 5 days. The vet explained that usually when there's gastric lymphoma it metastasizes to the liver first. Unfortunately when they were doing the ultrasound the liver looked solid, hypoechoic, and smaller/denser so she felt that it looked like it might be affected too. Hence the biopsy since its easier to biopsy that rather than the stomach. She looked at the slides then and there and there were too many lymphocytes seen which likely confirms the dx. So fornow it's about 90% its lymphoma. Right now they're going to make her comfortable and give her fluids and prednisone and anti-nausea meds to see if we can get her eating again. Then i can go pick her up and bring her home. The vet says Id be lucky to get a year with her IF we did chemo and I won't put her through that at all. I'll keep you posted. I'm devastated......probably less than a year if I.m lucky. 😭😭😭
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That's incredibly awful to get this news when you're already going through hell. Sorry is much too inadequate
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Thank you. You're so right. It's overwhelming....BC last year, Lymphedema, Broken Rib, Rare Allergy, Multiple Sclerosis, and most recent Thyroid Cancer.....now my poor kitty and her own cancer battle. Le Sigh. She is home and resting. I cannot express how happy I was to see her little furry self. Now to wait the next 2-5 days for confirmation from the biopsy and to come up with a palliative care plan. Fingers crossed somehow I have a few months with her....
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I won't have the path report back until next week, and given the holiday maybe not until the week after. But my derm was insistent that I share the path report with my MO because there's a link between this thing and renal cancer. So I may need additional genetic testing b/c I'm nearly 100% certain that the genetic testing I already had didn't look at that link at all.
I will never say never, because I sure never thought I'd have melanoma or osteoporosis or breast cancer. But I sure don't think I would ever get kidney cancer.
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Spoonie--I'm so sorry about this additional straw in your camel's back but this is the price we pay for loving our pets. As I've told many people, feel sorry for the pets that nobody cries over. You gave your cat an amazing life--focus on that.
edj--hang in there, sweet thing.
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oh my! I am so sorry for more bad news Spoonie. We lost our granddog last year at two with lymphoma. They even tried chemo. So I am hoping you get some quality time with your kitty!
Edj3, hoping you get good news and don’t have to wait too long. Such a journey!
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edj3 and Spoonie, you are both dealing with more than your fair share of Crap and Other Misfortunes. I am sending you both much love and support. I so wish I could do more. And I’m holding sweet Ari in my heart.
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Spoonie and edj3- you both are in my prayers! I have been so busy with the grandkids and today is the first day I have actually sat down and ate breakfast since August! Taking a day to clean the house and regroup! I had tried to post 2 other times and the post just disappeared! Poof it was gone! I didn't have time to retype it😕. I'll give you guys a breod life update. Grandkids are great. The baby granddaughter got her cast off. (She fell in my kitchen and broke her leg) marching band season is over and we have a new cat! Spoonie- my heart was aching when I read about you cat! We went through the same thing with our big guy. We lost our little guy in May and it was a shock! Just found him in the basement near my dryer. Then the big guy got sick 3 weeks later. He had pancreatitis about a year ago and we treated it with antibiotics and he seemed to get better. Turns out it was pancreatic cancer we got him in hospice care and he was put to sleep at our house. Which was so peaceful. He never really liked riding in the car so it would have been traumatic to try and get him to the vet. It was a blow losing both our cats Within a 4-week. We weren't planning on getting another one and then this little grey stray showed up at our house. He's the sweetest thing ever and he's just what we needed. I tried to find his owners but no luck I posted on all the social media pages in the neighborhood pages and nobody claimed him so he's ours now. We've already taken him to the vet and he's not chipped nor is he neutered that's happening Monday everything comes with a price right. Now on the health news - I've had a pelvic ultrasound and a transvaginal ultrasound. The results were not good and I'm waiting for the next step. I'm supposed to get in with a OBGYN as soon as I can and December 2nd is the earliest that I can get an appointment with the one I've chosen. I either have a cyst or an abscess on my ovary they can't tell and the fibroid I had last year has a grown.
That's alot! Sorry for the long post. I always read the post when I'm flexitouch pumping. I used to try and respond while I was pumping but it's so hard because I just have the use of my thumb and I hate to voice text! Please know you're all in my prayers and on my team!
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Spoonie- sending hugs and lots of love. I am so sorry about your kitty. I am hoping you get quality time with her and that she is comfortable. I hope that you and Ari can feel the love being sent your way.
Edj3- That was great that a spot opened up for you! I really hope you get results before the holiday. Waiting sucks for sure.
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Thanks everyone for the outpouring of love and support for Ari and I. I'm trying to block out a "timeline" and just be sure I'm loving on her every chance I get. My vet gave me this article link to look over to sort of explain what we're looking at, it's a very sad picture, even if we were to try to do chemo which I'm doubtful of. https://www.ethosvet.com/blog-post/feline-lymphoma/ According to her vet, she likely has Large Cell (agressive) Gastric (aka Ailment) Lymphoma that's metastasized to her liver. Not a great prognosis so I am hoping the pathology biopsy comes back Small Cell without METs. Fingers and paws crossed. I was so excited to see her eat a bit of the "baby food" I made for her last night. It was only 2 tsps of food, but it was the first food she'd WANTED to eat in 2 days. Prior to that I had been "dropper" feeding her liquids from chicken and tun. Le Sigh. The excitement faded when she was too sick and nauseous to eat anything again this morning. All she did was try to "bury" her food and go hide.
Waiting for the vet to call me back to see if I can give her anti-nausea meds every 12 hrs instead of 24 hrs.As for me, had the pre-op appt. Things are a go for the surgery, although I need to have a recheck in my Potassium levels before the 4th, as they are again low. On the good side, I went over my continuing pain/symptoms/fatigue with my PCP and she decided it was time to order a PET/CT Scan!!!! Oh I was so relieved! Having 2 cancers myself and such a strong family history of Lymphoma and other cancers I felt like a ton of bricks was lifted off of my spirit hearing that someone was listening to me and the fact that for the past 6 months I've been trying to deal with these increasing symptoms. Hopefully everything will be clear, but if not, well I'll be glad to find out NOW rather than later. Will keep ya'll posted. Again, I just keep being so thankful for my Primary. She gets me, that I'm the rare unicorn. She told me today that it's just unbelievable to her that I continue to pile up a new longer list of dxs and complications. She said it's awful to have 1 or 2 of these but to have 4 or 5 or 6 in a year is just hideious. Her and her nurses all gave me hugs this morning and were sending me home with love for Ari as well. I know I'm in good hands with them and that goes a long way to helping me get through another day.
How is everyone else doing? Anyone having issues with their hormone therapies? Any new scans come back clear and stable? I'm so hoping that things are going smoothly for the majority of ya'll my friends.
Varga -> I'm so sorry to hear that you had lost 2 of your furbabies in such a short period. I can't imagine. I've had 4 years since I lost my last kitty and it's still an awful thought. Losing both Ari and Gypsy in the same month would devastate me completely. So thankful that that little lovable stray found her way into your lives and hearts! Also, you are in my thoughts that whatever turns out to be going on with you, GYN speaking, the drs can make an accurate assessment and get things handled asap. Sounds scary to hear of growth in the fibroid and a possible abscess! I sure hope there is something easily treated and managed that's unrelated to any sort of cancer. Please keep us posted, ok?
BennyBear -> I'm sorry to hear about your losing your granddog at just TWO to lymphoma! It seems such an insidious disease. My brother died from it, so the word itself harbos a living nightmare. Hopefully there is a new furgrandpup to fill your heart with love these days.
Edj3 -> Fingers crossed your results arrive early next week. Waiting is the worst. And OMG, it seems shocking that there is a link between what could be going on with this leiomyoma and renal cancer!!!! I'm thankful your Derm brought that up so you could discuss it with your genetic counselor and team. Definitely get a test to check for that IMO. Please keep us posted when you hear something. I know it's hard to have hope that it'll be better news than the worst, especially like you say, running a string of bad luck in the past 2 years. I have immense sympathy with you my dear!
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spoonie, hoping your little guy doesn’t suffer. And that your surgery goes well. I am sorry you lost your brother to this nasty disease, I too lost mine to brain cancer. Nasty nasty disease!
Thanks for your kind words, we do have another granddog as our kids and grandchildren were devastated a year ago. Though He will never be replaced in their hearts there is anew fur baby I posted pics of several months ago.
Vargas good luck with your doctors appointment. I have to have a repeat ultrasound in two weeks as I have had some spotting. I am hoping it is just fibroids, but I also have a complicated kidney cyst they are watching. One always wonders what is related? My Breast cancer has neuroendocrine differentiation so I do worry that it is all connected, Sigh!!
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Spoonie- I had the right side of my thyroid removed in 2010. I had a large nodule and it had blood flow so it looked like cancer. It wasn't. The surgery was a little more 2 hours because the nodule had grown around my carotid artery. They couldn't biopsy the nodule before surgery so they did it during surgery had it been cancer if they would have removed the left side while they were in there. That was my first cancer scare. Recovery was a breeze compared to the SNB and lumpectomy. The surgeon did put me in a wrap for maybe 5 days keep me from moving my neck to much. I ate slow and soft food. Still praying for you and your furbaby!
I forgot to share that I got my eyes checked last week. Anyone on Tamoxifen needs to get their eyes checked yearly. Well, what a shock to find out I have glaucoma!!! Does anyone else have a problem with their eyes? I was fine before I started Tamoxifen. Just curious if anyone else has glaucoma. This is Freddie! He has found his forever home. He has all new toys and a tree!
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Vargadoll Freddie is so cute!
Spoonie my friend, still thinking of you, sending you love and energy and peace.
I saw my PCP yesterday for my annual physical, first time seeing him since all this BC stuff broke. I do love him, he's kind, thorough and when you need time with him, he gives it. I've never had a physical take that much time before except the intake physical when I joined the Army. Once he read through the path report for this atypical leiomyoma, he immediately said well let's get your kidneys scanned, oh and your remaining ovary too.
So I'll have those scans done on December 3. That week is packed full of medical appointments: Monday I have my annual eye exam, also see my MO's PA, Tuesday those scans of my kidneys and ovary, and Wednesday my heart scan.
In the meantime, we fly to LA tomorrow to spend the week with my younger son and his family. That's our tradition, Thanksgiving with them. We're all running a Turkey Trot 5K on Thanksgiving which should be fun except its going to rain. That's OK, I don't melt.
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Just a few comments but mostly good thoughts and wishes for all of you.
I had a regular eye check-up last spring and was surprised that there was increased pressure in my left eye. Had to come back for a glaucoma check—that was negative, there is none in my family, I’m quite sure it’s related to the AI. Boo.
I started a thread without much response—since checking in with my MO a few weeks ago I’ve switched from anastrozole to exemestane. No noticeable change (positive or negative) in SEs so now I have to decide which one to stick with going forward.
Re: pets in declining health, sometimes you have to ask yourself who you’re keeping them around for—you or them? We had a Corgi with degenerative myelopathy (basically ALS for dogs) and we decided it was time around a year ago. Could we have kept him around a few more weeks/months? Yes. But it had to be done at some point. I know it’s an excruciating decision. Consider the animal’s QOL. I miss that dog like crazy. He was the most interesting animal we’ve ever had. But we bring these delightful creatures into our lives fully aware they will not always be with us, and often it’s up to us to have the strength to let them go to the other side. There are *so* many good puppers and kitties waiting for them.
I’m heading to CA myself for Thanksgiving, although SF area. Two of my kids are there. Weather looks iffy but I’m considering that an excuse to stay inside and play board games all weekend. ;-)
Hubs and I signed our first ever wills yesterday. It’s an interesting mental place to be—thinking about the transition. Anyway—time to turn my brain space to what I have to be thankful for.
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Ingerp, we faced that choice this summer with our old kitty, Chloe. She was 20 and had started declining. Then about two days before I finished radiation, she just stopped being interested in food or water. We were going out of town for a week-long trip, and I didn't want her to either suffer or die alone, so we made that hard decision. She died on my lap, on her favorite blanket, and both of us petted and loved on her as she died. I miss my old girl terribly, but know it was the right decision for her.
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I totally hear what you're saying Ingerp, I would never want my baby to suffer for my sake. My last furbaby, Onyx, went to the rainbow bridge in my arms at home when it became clear that his QOL had reached that point. I'm am just somehow hoping to hold on to my Ari until we get a final dx with the thought that by some miracle it will be a more treatable type of Lymphoma without METS and with higher steroids for a time she may have a great QOL for a few months. The biopsy should be back today or Monday. IDK. She's only 4, so damn young, and has been my certified Emotional Support Furball since the day she arrived. It makes it all so much worse. I'm devastated as this all came on relatively quickly, snowballing these last few days. My heart breaks that today is the first day I've yet to hear her purr nor chirp. She is so very tired and I hate it all. ** *so many tears*** At least she has a great view from her cat tree next to me in the living room where she can stare at the birds and dream of catching them.
Please all of you who are traveling, be safe and enjoy the time with your family and friends. I hope you all have a blast with better weather than predicted! Good luck in the Turkey Trot Edj3! I hear ya on the stress of having 5 bajillion tests in a short time. It's overwhelming. So thankful that your Primary is checking everything out for you. Seems you are in great hands with him. Please keep us posted when you hear anything. You're in my thoughts. Ingerp - WIshing you a continued smooth transition to your new AI. Maybe in a few months you will notice less SEs on your prior? Fingers crossed.I think you're right about the eye issues being related to the AI. It's not too much of a stretch to connect the dots I think. Also, Varga, I had eye issues (pressure/pain/increased sensitivity) like you did on Tamoxifen, not to the extent of Glaucoma but it sure seems to be something that most MO's don't warn us about. BennyBear - Good luck with your US in 2 weeks. Keeping you in my thoughts for clear results or something that is NON cancer related. Keep us posted.
Hugs to you all my friends. You are all one thing I am so thankful for.
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Bennybear- Also sending good thoughts on your upcoming US. I had to smile, as my parents call my dog their granddog too!
Vargadoll- I had a scare with my vision when I first started tamoxifen. I had a sudden onset of blurred vision in one eye. I had to stop tamoxifen briefly and it turned out to be vitreomacular adhesion. They say it is was unrelated to tamoxifen. They said it isn’t uncommon but usually happens to those that are older. I am sorry you have developed glaucoma, did any of your docs attribute it to the tamoxifen?
Ingerp- Safe travels to Cali! I hope you have a wonderful time😁Edj3- Best of luck in the turkey trot!!! Safe travels and enjoy your time with family. Also sending you good thoughts for all of your upcoming scans. Sounds like you have an amazing PCP.
All the best to everyone I am thankful for this community.
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I haven't asked the eye doctor yet. Ingo tomorrow for my visual field exam and I plan on asking questions then. I have looked on other threads here in BCO and have found others who developed glaucoma while on Tamoxifen.
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My eye pressure increased while on Arimidex, another reason I stopped taking it. The doctor put me on medication to prevent glaucoma and keep the pressure down. Good thing to have your eyes checked while on Arimidex.
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Happy Thanksgiving to you all!! Whether you post often, or you’ve just posted once, this has been a thread full of love and support. Don’t tell the other threads, but this one has become my favorite. I’m 15 months out from my lumpectomy, and 13 months out from finishing rads. I feel like my equilibrium has sloooowly returned. You have each had a small part in that. I’m lucky to have had support from family and friends, but the support from women going through the same thing has meant more than you know. Whether you’re celebrating with a large family, or a small group of friends, or just ordering Chinese food and watching a movie, I hope your day is filled with wonderful things. A special shout out to edj3: let us know how your Turkey Trot works out! Sending much love and gratitude to each of you....
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