Dis Breast Cancer Survivors Part IV - GAGWTA
- Thread starter Pea-n-Me
- Start date
Feralpeg
Living and Loving Windermere!
- Joined
- Dec 29, 2000
China Expat, Congratulations!
LMP, I am so sorry to hear you are facing another surgery. I hope this does the trick and you wont be living with all that pain!
Kendall ended up having the antibody test. I figured that, if she was positive, than I would know I'd had it. She came back negative. Now, the doctor is telling us that her test may not have been accurate. I am seeing the oncologist on the 15th. I will ask for a prescription for the antibody test. Crazy how notoriously bad these tests are proving.
I am hoping that the oncologist will order another PET scan. I am really ready to be off the Ibrance. It's much better than the IV chemo, but it is so expensive and it really drags me down. Not great during a pandemic! The past couple of months, I've noticed a lot of joint pain. Unfortunately, that seems to be the result of the hormone inhibitor. No way I can stop that, so I will ask the oncologist if there is anything she recommends for the arthritis. I am so stiff. Just getting up and down is hard.
Kendall is doing okay except that she may need her medication upped. Some of the things that had receded when she first started the Plaquenil, are coming back. Since we were both sick in March, she has developed this cough. It's not all the time. She will be talking and all of a sudden, she seems to lose her breath and has to cough. The doctor gave her 10 days of a steroid and it got better. Unfortunately, as soon as she stopped the steroid, the cough came back. It seems to be inflammation left over from whatever she has. She needs to go back to the doctor, but they won't see her in person because she has the cough. Crazy situation.
Sadly, I found out on Tuesday that my best friend from Missouri has tested positive. She was tested a couple of weeks ago prior to a heart ablation procedure and was negative. She was scheduled for a follow up on Wednesday, so they tested her again. This time, she tested positive. She has no idea where she picked it up. She's been extremely careful because she has Non-Hodgkins Lymphoma. So far, she has had no symptoms. They tested her husband today. He won't get the results back until Monday. Praying they do well.
I will be thinking and praying for you all! Hang in there, ladies!
LMP, I am so sorry to hear you are facing another surgery. I hope this does the trick and you wont be living with all that pain!
Kendall ended up having the antibody test. I figured that, if she was positive, than I would know I'd had it. She came back negative. Now, the doctor is telling us that her test may not have been accurate. I am seeing the oncologist on the 15th. I will ask for a prescription for the antibody test. Crazy how notoriously bad these tests are proving.
I am hoping that the oncologist will order another PET scan. I am really ready to be off the Ibrance. It's much better than the IV chemo, but it is so expensive and it really drags me down. Not great during a pandemic! The past couple of months, I've noticed a lot of joint pain. Unfortunately, that seems to be the result of the hormone inhibitor. No way I can stop that, so I will ask the oncologist if there is anything she recommends for the arthritis. I am so stiff. Just getting up and down is hard.
Kendall is doing okay except that she may need her medication upped. Some of the things that had receded when she first started the Plaquenil, are coming back. Since we were both sick in March, she has developed this cough. It's not all the time. She will be talking and all of a sudden, she seems to lose her breath and has to cough. The doctor gave her 10 days of a steroid and it got better. Unfortunately, as soon as she stopped the steroid, the cough came back. It seems to be inflammation left over from whatever she has. She needs to go back to the doctor, but they won't see her in person because she has the cough. Crazy situation.
Sadly, I found out on Tuesday that my best friend from Missouri has tested positive. She was tested a couple of weeks ago prior to a heart ablation procedure and was negative. She was scheduled for a follow up on Wednesday, so they tested her again. This time, she tested positive. She has no idea where she picked it up. She's been extremely careful because she has Non-Hodgkins Lymphoma. So far, she has had no symptoms. They tested her husband today. He won't get the results back until Monday. Praying they do well.
I will be thinking and praying for you all! Hang in there, ladies!
Dancind
Tinkerbell's Mom
- Joined
- Jul 25, 2001
China, congrats! Glad you are through with it.
Peg, here's my sorry Plaquenil story. Took it for several years (for unknown immune problems) until a rheumatologist told me to get off of it. It's a sulphur med, and I think it contributed to my sulfite sensitivity along with a treatment with a sulfa based antibiotic that I had an anaphylactic reaction to. Had a horrid cough for over a year, got lots of tests. Nothing. Turned out to be my daily wine and the sulfites in that. Switched to natural wine (and less of it), no more cough. So, possibly the Plaquenil.
My puppy's breeder has taken a test and is waiting for results. She's 70 something, so hope it's negative. It hasn't been bad in OR, but she lives in a part of the state that was re-opening.
Peg, here's my sorry Plaquenil story. Took it for several years (for unknown immune problems) until a rheumatologist told me to get off of it. It's a sulphur med, and I think it contributed to my sulfite sensitivity along with a treatment with a sulfa based antibiotic that I had an anaphylactic reaction to. Had a horrid cough for over a year, got lots of tests. Nothing. Turned out to be my daily wine and the sulfites in that. Switched to natural wine (and less of it), no more cough. So, possibly the Plaquenil.
My puppy's breeder has taken a test and is waiting for results. She's 70 something, so hope it's negative. It hasn't been bad in OR, but she lives in a part of the state that was re-opening.
luvmarypoppins
<font color=darkorchid>I am debating whether to pu
- Joined
- Aug 23, 2003
How is everyone doing?
We are in wedding countdown mode. 19 days to go!!
The bridal shower was not enjoyable. I am glad dh was with me. We were squished in some room with about 60 people. About 7 were wearing masks which included us. The food was served family style on big platters that you had to pass around and share the same serving spoon. You also had to share the bread and break it off yourself. I took my mask off, took a deep breath and took a picture with them.
Next week I have a Pcp appt. Then in sept. It's ct scan and surgeon again.
Got to see ds2 twice. They lost electricity for 6 days after the storm.
ds3 got tested for covid - negative ptl! He was working on that floor.
I went to church once. We had 66 people instead of the usual 180. We had temperature checks, masks and social distancing. I felt safe there.
next up rehearsal brunch.
My cousin and daughters family are going to be at the Polynesian next week. I can't wait to hear about their covid Disney experience!
GAGWTA.
We are in wedding countdown mode. 19 days to go!!
The bridal shower was not enjoyable. I am glad dh was with me. We were squished in some room with about 60 people. About 7 were wearing masks which included us. The food was served family style on big platters that you had to pass around and share the same serving spoon. You also had to share the bread and break it off yourself. I took my mask off, took a deep breath and took a picture with them.
Next week I have a Pcp appt. Then in sept. It's ct scan and surgeon again.
Got to see ds2 twice. They lost electricity for 6 days after the storm.
ds3 got tested for covid - negative ptl! He was working on that floor.
I went to church once. We had 66 people instead of the usual 180. We had temperature checks, masks and social distancing. I felt safe there.
next up rehearsal brunch.
My cousin and daughters family are going to be at the Polynesian next week. I can't wait to hear about their covid Disney experience!
GAGWTA.
luvmarypoppins
<font color=darkorchid>I am debating whether to pu
- Joined
- Aug 23, 2003
Just checking in and hope everyone is doing well. My update is not good news but kind of expected.
We went to the vascular surgeon today. He said the latest ct scans showed that things are getting worse. So the next surgery is being coordinated. Another 4-5 days in intensive care again and that horrible spinal drain again. It will probably be around the middle of October and no later than early November. He doesn't want to wait any longer. Now they have to coordinate with the 2 cardiac surgeons and 2 vascular surgeons who all have to be in the operating room together with me. He also found a problem by my right kidney which he doesn't want to deal with right now.
The rehearsal dinner was nice with a beautiful waterview.
The wedding was terrible. My dil was obsessed with taking pictures with her 24 person bridal party and all her family and relatives. We had exactly 2 pictures taken and not in a nice setting like her other people did. We missed the whole cocktail hour because of her and the regular meal was terrible. My son's friend got drunk and threw up on the dance floor. I didn't talk to my son during the dance. She did tell ds3 there was a "mishap" with your mom and the pictures . They had another a party at a park with the restraunt outside and new dress the next day. None of our family went to this. Three days was too much and no one wore masks at any of these places.Glad it's over.
GAGWTA.
We went to the vascular surgeon today. He said the latest ct scans showed that things are getting worse. So the next surgery is being coordinated. Another 4-5 days in intensive care again and that horrible spinal drain again. It will probably be around the middle of October and no later than early November. He doesn't want to wait any longer. Now they have to coordinate with the 2 cardiac surgeons and 2 vascular surgeons who all have to be in the operating room together with me. He also found a problem by my right kidney which he doesn't want to deal with right now.
The rehearsal dinner was nice with a beautiful waterview.
The wedding was terrible. My dil was obsessed with taking pictures with her 24 person bridal party and all her family and relatives. We had exactly 2 pictures taken and not in a nice setting like her other people did. We missed the whole cocktail hour because of her and the regular meal was terrible. My son's friend got drunk and threw up on the dance floor. I didn't talk to my son during the dance. She did tell ds3 there was a "mishap" with your mom and the pictures . They had another a party at a park with the restraunt outside and new dress the next day. None of our family went to this. Three days was too much and no one wore masks at any of these places.Glad it's over.
GAGWTA.
Feralpeg
Living and Loving Windermere!
- Joined
- Dec 29, 2000
LMP, sorry to hear your news was not good. Sorry to hear the wedding was bad, as well.
I also had some disappointing news. My latest scan showed an increase in activity. It seems the hormone blocker had stopped working. The oncologist took me off the blocker and has started injections of Fluvestrant. I had two shots on Monday. I will have two more in two weeks. After that, it will be two a month. The doctor is hoping that this will get the activity going the opposite way. I was really hoping to be able to stop the Ibrance, but that isn't looking like a possibility for some time. She had originally told me 6 months for the Ibrance. It's been a year. While my tumors are 60 percent smaller than when I began the treatment, I seemed to be stalled. This may be something I just live with.
On the Kendall front, the rheumatologist has taken her off the Plaquenil (hydroxychloroquine). She has started having some heart issues. This is common for hydroxychloroquine users. The doctor wants to try treating Kendall holistically to see if that helps. The next step is a chemo type drug. That comes with all kinds of issues. She also wants Kendall to see a cardiologist to make sure there isn't any damage as a result of the Plaquenil. Just when I thought we had a working plan.
Oh well. We're here. We are much luckier than many.
Hang in there, LMP! I am praying for you!
Always in my thoughts and prayers, ladies!
I also had some disappointing news. My latest scan showed an increase in activity. It seems the hormone blocker had stopped working. The oncologist took me off the blocker and has started injections of Fluvestrant. I had two shots on Monday. I will have two more in two weeks. After that, it will be two a month. The doctor is hoping that this will get the activity going the opposite way. I was really hoping to be able to stop the Ibrance, but that isn't looking like a possibility for some time. She had originally told me 6 months for the Ibrance. It's been a year. While my tumors are 60 percent smaller than when I began the treatment, I seemed to be stalled. This may be something I just live with.
On the Kendall front, the rheumatologist has taken her off the Plaquenil (hydroxychloroquine). She has started having some heart issues. This is common for hydroxychloroquine users. The doctor wants to try treating Kendall holistically to see if that helps. The next step is a chemo type drug. That comes with all kinds of issues. She also wants Kendall to see a cardiologist to make sure there isn't any damage as a result of the Plaquenil. Just when I thought we had a working plan.
Oh well. We're here. We are much luckier than many.
Hang in there, LMP! I am praying for you!
Always in my thoughts and prayers, ladies!
kittylady1972
Disneyholic
- Joined
- Oct 20, 2003
Oh @luvmarypoppins I am so sorry that the wedding went so badly. That's just horrible.
And I'll keep you in my thoughts for your upcoming surgery. That doesn't sound fun at all but hang in there. Let us know how things go for sure.
And I'll keep you in my thoughts for your upcoming surgery. That doesn't sound fun at all but hang in there. Let us know how things go for sure.
smiley_face2
DIS veteran
- Joined
- Mar 26, 2002
LMP, Peg, I am really sorry you don’t have better things going on. We had a really rough summer too, I won’t go into the details but if I was told what was coming I literally would have run away to hide in a cave 
on top if it hubby had 2 long stents put in, at the beginning of August, and has to have a double bypass asap for the 2 other blockages they could not get to with stents. The 2 stents have at least stopped his chest pain, and he is able to stay awake during the day! I think I was pretty darn close to losing him. Today I am on the couch after some surgery for varicose veins on one leg. I am hopeful my leg wont be aching all the time now! Hubby lost a step sister this week, we are still clueless as to how she died? She was in a coma for 3 days until they took her off life support. I am praying for yhe world right now, it really feels like everything has happened at once and I am afraid to turn on the news each morning!! It is so scarey to see the covid numbers climbing everywhere, Canada is no exception. We are also facing a snap Provincial (state) election this next month, and there could be a national election, if our Prime Ministers throne speach does not go well today!! The other political parties could do a vote of “non-confidence” forcing the country into an election in October. Again I say I am truly grateful we had our awesome family vacation in Disneyland at the end of February! The border to the US is still closed and looks to stay that way for many more months. I am still starting my days having my coffee watch double episodes of Leave It To Beaver on MeTV. I sure wish I could make that show my reality!! Lol
on top if it hubby had 2 long stents put in, at the beginning of August, and has to have a double bypass asap for the 2 other blockages they could not get to with stents. The 2 stents have at least stopped his chest pain, and he is able to stay awake during the day! I think I was pretty darn close to losing him. Today I am on the couch after some surgery for varicose veins on one leg. I am hopeful my leg wont be aching all the time now! Hubby lost a step sister this week, we are still clueless as to how she died? She was in a coma for 3 days until they took her off life support. I am praying for yhe world right now, it really feels like everything has happened at once and I am afraid to turn on the news each morning!! It is so scarey to see the covid numbers climbing everywhere, Canada is no exception. We are also facing a snap Provincial (state) election this next month, and there could be a national election, if our Prime Ministers throne speach does not go well today!! The other political parties could do a vote of “non-confidence” forcing the country into an election in October. Again I say I am truly grateful we had our awesome family vacation in Disneyland at the end of February! The border to the US is still closed and looks to stay that way for many more months. I am still starting my days having my coffee watch double episodes of Leave It To Beaver on MeTV. I sure wish I could make that show my reality!! Lol
Pea-n-Me
DIS Veteran
- Joined
- Jul 18, 2004
Sorry for all the tough news but glad people still keep in touch. I agree we are in a tough place globally right now, and all need to be kind and there for one another. Glad, at least, we’re all still here and hanging in! I have some areas post radiation that have been bothering me. Tests say it’s all ok. I guess these are the problems that can crop up years down the road. But anyway, it’s the least of our problems! Love to all!
Last edited:
snappy
Survivor
- Joined
- Apr 15, 2002
My heart goes out to you, LMP, Peg, and Smiley face. There is a lot on each one of your plates, on TOP of dealing with the day to day stresses of limiting exposure to COVID-19. You are also in my prayers. As Pea said above, let’s stay in touch. This thread has been a lifeline for me for the last 15 plus years. My hope is that it can continue to be for many.
GAGWTA!
GAGWTA!
Last edited:
smiley_face2
DIS veteran
- Joined
- Mar 26, 2002
Linda! Glad you made the move! I think? The fires and smoke have been horrendous this year though so not a great first summer in your new home! Hopefully it will not repeat next year! Did your hubby get the renos done? Hope your daughter is doing well, both of ours are now, after an extremely bad couple of months for one of them.
snappy, good to “see” you! If you have any neat pics of NO you feel like sharing for some arm chair travelling for us that would be cool!
peanme, yes I think we all have something that hangs on or shows up, to remind us we are lucky to have survived right? Me.... always the Pollyanna!
snappy, good to “see” you! If you have any neat pics of NO you feel like sharing for some arm chair travelling for us that would be cool!
peanme, yes I think we all have something that hangs on or shows up, to remind us we are lucky to have survived right? Me.... always the Pollyanna!
smiley_face2
DIS veteran
- Joined
- Mar 26, 2002
Oh soooooo pretty!! I would love to go there one day, especially because of all the shells on the beach! Beachfront Bargainhunt on HGTV shows places there a lot!
Feralpeg
Living and Loving Windermere!
- Joined
- Dec 29, 2000
Thank you, Pea, Snappy and Smiley. We are family here. Just knowing that really helps get through the day to day craziness! Snappy, thanks for the beautiful pictures! Sometimes, I forget that there is still a lot of beauty in this nutty world!
MelissaE1
Truly believes in the Magic
- Joined
- Sep 5, 2002
Hi DISboards breast cancer survivors, I hope it’s OK to post here. It said at the beginning you were open for hand holding and I could really use some. And maybe some hope, because right now I’m struggling.
Also, warning in advance – sometimes I struggle to be brief.
For some reason during the recent hurricane I decided it would be good to do a self breast exam. No idea why. Well, I discovered a decent sized irregular lump in my right breast. I had a mammogram and ultrasound and they not only found something they want to biopsy, they found 2 enlarged lymph nodes as well. Usually I am an information-a-holic (I know other DISers understand) but I was so stunned I really didn’t get much. I remember the tech said nodes can be swollen for a number of reasons, that the radiologist was on the cautious side so biopsy one of those as well. The mass itself was apparently, if I caught the info right, rated 10-20ish% risk for cancer (tech said “lowest 4”?), which I might see as a positive if the lymph nodes thing didn‘t exist. That’s really catching me. As it is, I’ve killed myself off routinely in the week since the appointment, and I have another one to wait before the biopsy. Trying to stay off the internet as it is scary.
Of course I missed my mammogram last year because I was traveling with my husband for his work and then COVID came. I have pretty severe asthma and resultant lung damage so ultra cautious. Been stressed for months and I haven‘t been taking care of myself at all. So I’m beating myself up on top of all the rest. Suddenly I’m tired and wondering if my recent lower appetite/weight loss isn’t actually coffee and stress, plus a million other possible symptoms that seem plausible when I start thinking. I remember I had a deep itchy rash on that side a few months ago, but I have eczema so rashes aren’t unusual for me. I know, I sound like a real mess!
Really I just want to feel that there’s some possible hope for me at this point, maybe even if both biopsies are positive. My head is reallly scaring me. My husband is in town but exposed to a lot of people so he’s staying elsewhere, leaving me a lot of time to think. Two weeks is a long time, and my brain is pretty creative.
I don’t hang out on the DIS as much as I used to when my kids were home, but for some reason it seemed like a good place to go atm. TIA to anyone who reaches out. Hugs!
Also, warning in advance – sometimes I struggle to be brief.
For some reason during the recent hurricane I decided it would be good to do a self breast exam. No idea why. Well, I discovered a decent sized irregular lump in my right breast. I had a mammogram and ultrasound and they not only found something they want to biopsy, they found 2 enlarged lymph nodes as well. Usually I am an information-a-holic (I know other DISers understand) but I was so stunned I really didn’t get much. I remember the tech said nodes can be swollen for a number of reasons, that the radiologist was on the cautious side so biopsy one of those as well. The mass itself was apparently, if I caught the info right, rated 10-20ish% risk for cancer (tech said “lowest 4”?), which I might see as a positive if the lymph nodes thing didn‘t exist. That’s really catching me. As it is, I’ve killed myself off routinely in the week since the appointment, and I have another one to wait before the biopsy. Trying to stay off the internet as it is scary.
Of course I missed my mammogram last year because I was traveling with my husband for his work and then COVID came. I have pretty severe asthma and resultant lung damage so ultra cautious. Been stressed for months and I haven‘t been taking care of myself at all. So I’m beating myself up on top of all the rest. Suddenly I’m tired and wondering if my recent lower appetite/weight loss isn’t actually coffee and stress, plus a million other possible symptoms that seem plausible when I start thinking. I remember I had a deep itchy rash on that side a few months ago, but I have eczema so rashes aren’t unusual for me. I know, I sound like a real mess!
Really I just want to feel that there’s some possible hope for me at this point, maybe even if both biopsies are positive. My head is reallly scaring me. My husband is in town but exposed to a lot of people so he’s staying elsewhere, leaving me a lot of time to think. Two weeks is a long time, and my brain is pretty creative.
I don’t hang out on the DIS as much as I used to when my kids were home, but for some reason it seemed like a good place to go atm. TIA to anyone who reaches out. Hugs!
snappy
Survivor
- Joined
- Apr 15, 2002
Hi Melissa!
I too have been known to uh, somewhat “generous sized” posts.
Glad you found our thread. It really helps to have support and to be able to share info/experiences. We have had lots of posters over the years since 2005 that were here due to having a scare and moved on after receiving benign results.
I am a 16 year survivor so most of my knowledge is a bit dated. I think when you said a “4”, the tech mean the mammogram Bi-rad scale. It is a scale that is subject to interpretation by the radiologist in my experience. Kind of a diagnostic score to determine whether further tests are needed.
Sounds like you will be having a surgical biopsy if they are checking lymph nodes, probably at the same time. Waiting for procedures and results can be the worst part of this. The timing during Covid 19 adds another whole layer to the issue, especially when you are separated from family and friends.
It is very natural to worry about each ache and being tired. The mind is a beautiful thing but it can really lead you to a dark place. Between quarantines, hurricane tracking and prep, and possible economic concerns, it’s no wonder you are tired and stressed. It can seem endless. Too many unknowns and no end in sight. One good thing if there ever can be a silver lining with this stuff is that after your biopsy results are in, you will know what you are facing, if anything. I remember learning that the over all benign result rate for breast biopsies is 80%. So I take heart from that.
Hang in there for now. I am betting other posters will chime in soon.
Laurie
I too have been known to uh, somewhat “generous sized” posts.
Glad you found our thread. It really helps to have support and to be able to share info/experiences. We have had lots of posters over the years since 2005 that were here due to having a scare and moved on after receiving benign results.
I am a 16 year survivor so most of my knowledge is a bit dated. I think when you said a “4”, the tech mean the mammogram Bi-rad scale. It is a scale that is subject to interpretation by the radiologist in my experience. Kind of a diagnostic score to determine whether further tests are needed.
Sounds like you will be having a surgical biopsy if they are checking lymph nodes, probably at the same time. Waiting for procedures and results can be the worst part of this. The timing during Covid 19 adds another whole layer to the issue, especially when you are separated from family and friends.
It is very natural to worry about each ache and being tired. The mind is a beautiful thing but it can really lead you to a dark place. Between quarantines, hurricane tracking and prep, and possible economic concerns, it’s no wonder you are tired and stressed. It can seem endless. Too many unknowns and no end in sight. One good thing if there ever can be a silver lining with this stuff is that after your biopsy results are in, you will know what you are facing, if anything. I remember learning that the over all benign result rate for breast biopsies is 80%. So I take heart from that.
Hang in there for now. I am betting other posters will chime in soon.
Laurie
Share this page
-
Signage Revealed for Pixar Fest Marketplaces at Disneyland
-
Limited Time Offer: Discounted DVC Rentals!
-
See the 'Pixar Pals Playtime Party' Celebration at Disneyland
-
Together Forever - A Pixar Nighttime Spectacular Pixar Fest 2024 Fireworks
-
New Behind-the-Scenes Experience Coming to Cirque du Soleil at Disney Springs
GET A DISNEY VACATION QUOTE
Dreams Unlimited Travel is committed to providing you with the very best vacation planning experience possible. Our Vacation Planners are experts and will share their honest advice to help you have a magical vacation.
Let us help you with your next Disney Vacation!
Dreams Unlimited Travel is committed to providing you with the very best vacation planning experience possible. Our Vacation Planners are experts and will share their honest advice to help you have a magical vacation.
Let us help you with your next Disney Vacation!
