Just diagnosed, and seeing the oncology doctor Tues, July 20th
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Sunday August 1st, and up your nose Covid test at 7:30am that says Negative 4 hours later. In those instances, I keep my eyes closed, let them do it and say thank God it is done. This means my Tues, video call about chemo and how it works will happen. Wednesday 2nd ultrasound and guided biopsy. Friday morning a Bone density test and CT scan. Scheduled to begin my first chemo August 13......in the morning.
For today, back to do some work for work and email the VP my dean suggested. Let her my doctor wanted me to be on disability, but as college worker, i do not have it, so I need to work from home. More to come. Still do not have the Fish test results to know if I have 4 or 8 infusions.
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Soooo glad you had such a great experience at COH!!! I've seen and heard great things about that hospital. I'm sure feeling sooooo good about your team as you met various members has helped you reach this place of acceptance too.... it helps sooo much during difficult times like you're going through now.... Thanks for the update!
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Got my call to cover chemo and the various results, feelings, medications and all that.
I will get a steroid with the infusion. I read many of you had that and wondered about me. I will be given something like what diabetics have on their body for insulin, but mine will be Neulasta for 3 days after the infusion.
I will be getting a call to put in the port. Yikes!! I have had many skin cancers taken off and stitched, so i am hoping that it is some of the same. I told the nurse on the call, that so many of you have shared I had a lot of information and would just make a list of anything else and ask on the infusion day.
My work was another story. We have not been in the office since March 31st of 2020. A few months ago the supervisor was called to put any and all items on the floor somewhere else. He had to do it in 2 hours or so. Well, it has not moved. Today was a take it out day, and a toss the items we do not need day like food and more food. We are a foster youth office, so youth came in for food. The church gals kept it stocked. I talked to the VP of HR and Diversity and all that. We talked of my diagnoses and what i will need. I am printing the form she provided for the doctor I will bring in the morning. I am calling her thursday to update her on next week. My Dean suggested i not work, but really, i need a couple days in the office to sort my stuff or he will get rid of it while i am gone.
All in all, it is good to be out and about. More after Wed biopsy and ultrasound.
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I agree, Kathy, it's so helpful to stay busy and keep moving forward. Keep us posted on how it goes with Wednesday's biopsy and ultrasound.
Blessings, sleep well,
Esther
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Visit today was to be 2nd ultrasound done since first diagnosed, but focus on lymph nodes this time. The tech said the right was boring. Nothing to see. Excellent really. The left side with the mass took a bit longer, but again, noting noted and nothing to see in the lymph nodes. Just that funky mass causing the problem. So what was scheduled for 8-10am, turned out to be 7:55 to 8:20am, as i was early, I sat and read my newspaper on my phone till 9:10am to wait for the radiologist to check if a biopsy was needed. At that 9:10 mark, nothing noted as trouble, so no biopsy!!!!
I expect the report will be put in the system today. Also, since it is a research hospital. I was called to ask if i want to be in a study on first treatment chemo patients. I said yes, keeping in mind this great care is coming from a leading research center. My sister was there as she drove to the appointment and said no to me when the person ask if i went a $50.00 Amazon card to get in the fecal test. Seems my sister did not do one for her DOCTOR...and she has stomach issues. She had went on vacation and never completed it. I got to tell her they can identify things in our stool. I said i had read a story of a fellow who studies poop, and from his science perspective, he gets to see the inner workings of what the body expels. Not the poo, the end result of info.
So I have a bone scan and cat scan Friday. Clear those hurdles, then Chemo Friday the 13th and Monday the next week my hair goes short!! Suggested by the person that will do it. I must say that my first thought entering into the room with the many wigs, scarves, hats and more, that i had entered a halloween store. No curly wigs that i saw, just long straight styles. An odd moment. Truly it is not my style. I went to a grocery store after and saw two very dark haired women who worked there that have hair cuts just like those wigs. The magic is that there is a wig for everyone! I found a few online..curly, but i may get one from the COH short as it is very low cost..................I need to read the blogs more here on this topic..
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To all who read this..three hours. First to get the Blood lap done. (Great numbers. All or most in mid range.
Then to get the injection at the N. Imaging Center for the bone scan later. IV in and left in, so the CT guys could use it for the CT scan.
For the cat scan, we are given two bottles of water to drink. Might i say, that it does not taste like tap water. I also thought adding the lemonade packet they offer, just may turn me away from the lemon water i enjoy at home. That said, the two tecs were fabulous. I was reminded i never bought pants without zippers, so i had to lower my pants under the warmed blanket to pull them to my knees. Of all the tests, that one was the best so far.
Hung around and was told for bone scan i could have a bite to eat if i wished. I just had a few mints and a couple nuts from my purse stash and a cup of coffee. FLASH. That was almost not a good idea. The bone scan is 30 minutes. On the back. My MRI was face down, so weighing the two tests the 30 minutes face down is better then on the back. In both, I closed my eyes and said the serenity prayer. Reminding my body to not move or flinch or i would need to Do OVER!! Also, he scan the bladder first as it was likely as empty as it could be since i just emptied it. Yikes! I do not drink for 2.5 hours before i donated platelets at the Red Cross, as you are lying down 2 hours at least there.
So I made it. For fun, I told the tech Joe i was practicing wearing my hair up all the time, as i knew the long is doomed. I had to take out my clips and pins. He said i could do what his wife did...Mohawk with a super peak on top!!! Joe is about 6 foot 5. Big guy! Was thinking his wife wanted to gain some height!!!
Looks like I will be getting my 2nd Covid nose test Monday AM, port in Tues and Chemo starting Friday. I will then post on the Chemo in July August boards.
Thank you all for sharing your jouney.
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Hi Kathy,
Thanks for letting us know how you're doing! I'm glad you have all that behind you and that it went so well.
I know what you mean about trying to snack in the middle of tests. I'm way underweight now and lost even more weight thanks to all the driving and dr. appointments, waiting rooms... leading to many missed meals. I now bring drinks and snacks with me, like the nuts you mentioned (macadamia, pecans and walnuts are the best options) and a protein bar with the lowest sugar I can find.
I will continue to pray for you as you go through this.
Sleep well,
Esther
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Thank you Esther.
Our college opened and boy was it a mess. We had the back of the house that was remodeled and the supv had to get everything off the floor. Oh my.....I worked a day and a half last week and possibly 3 this week. I must get every item boxed and in a cabinet and anything i love home with me. I have been approved under ADA to work from home, so he could toss my stuff. We set up classes for foster parents with the DCFS and we have two renovated rooms for Foster Youth. Our Dean is the nicest person every and wants no junk. My goal for Monday is bold, but i will do it. 100 plus ounces of water, food and i can do it.
I wish i was under weight. I am going back to non COVID home eating and making better choices. I am glad you are coming up with ideas too.
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Port put in Tuesday quickly and efficiently. Sadly, at a Cancer Hospital, this is done over and over every single day. A number of people were there not for the first time. Today, 20 hours after it was put in, the bruise has begun. Yep. Not much of any pain. Took an 800 mg Ibuprofen yesterday and one this morning, as I am working today. Anyone else want to share on a port being put in and the use?
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Genetic testing. I consented to have my blood tested at the City of Hope. The day before my 4 infusions were to start, I have moved up a number of floors in my diagnosis. I carry the BC gene. Looks like I need a few surgeries in the near future. Today I meet with the doctor to find it. Likely I will start a new blog and find new ones with people sharing this gene. What a journey.
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You have lots going on between work and appointments! I imagine on some level busy helps distract though with all you're doing medically - appointments, etc. it keeps this all at the forefront even more. Sounds like you're feeling quite comfortable at the City of Hope from you various posts. Not surprising..... and a good thing with the added treatment/surgeries and all you'll have to undergo with carrying a BC gene too. Hang in there K-Gobby - sounds like you are!
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Livin Life-You are so right. I worked 4.5 days after our campus office opened, knowing we had to recycle almost all the papers and stuff collected. Funny how 15 months out of the office due to COVID, left me with no cares on any of it. I took my stuff home or at least most. The rest in safely in tubs in the room we use for those items now.
I love the City of Hope and am going into my first chemo with little fear. I have said i have been a platelet donor for 25 years, so in some ways the process is the same. EXCEPT, in this case I am receiving drugs that can cause side effects. A way different process then giving life. One infusion at a time. With all of the support in person and from you and others on this road, I will do it a day at a time.
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I was ok on my first chemo treatment. I must say it is because i have donated platelets since 1995, over 640 times. The needle this time is in a port that causes no pain. The meds from my first day was not bad as i took nausea pills the first 24hrs. The Benadryl given put me to sleep by 8:30pm. I will have 11 more infusions. One each Friday early. I hope you all keep posting how you are doing. It will help me.
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Sure wish my title was able tp be changed. But i do want to say, that from July 20th to today, August 22nd, I have had an MRI, Bone Density, Electrocardiogram, CAT scan and now 2 chemo infusions of 12. On July 20th, I had my first meeting with the Medical Oncologist with the news from the Breast Surgeon that my mass was cancer and big enough, that with margins to remove, I would have no breast. I am small breasted. Weight has added a bit of fat.
So from August 12th, when I first found out i did not have ordinary breast cancer. Not the simple 4 infusions over 3 months, but still the one where a double mastectomy appeared right, although a lumpectomy provided the same results for many, but not for me due to the size, No lumpectomy. I stopped looking at mastectomy results, as i must talk to the surgeon first. What can i do in my case and how in the world can i look at myself again? I have read so many stories on this site and my own friend who said you learn and accept. I find that if I get the info, I sit with it, see how it is in my plan and how it was provided as the best action for my cancer treatment. The nurse Veronica i had in the infusion room reminded me that they are here only for cancer patients. That is the work she does here. Treatment, care and help in answering questions. Jeremy said the same the week before. I met a lady this last Friday who was diagnosed with Colon cancer at 60. She waited for a colonoscopy. So her sister had breast cancer and she has been doing this cancer walk for over 10 years. We talked about so much. Then she got her blood test call and i was taken to the infusions are for my blood test. Compassion is in abundance in all the departments of COH. The Doctors all say I have a choice in my plan. Always. The Gyno surgeon I met with last week gave me his plan.
Dr. Lee said i would be surprised at choices some women make. He gave me the statistics on reoccurring cancer in the ovaries and fallopian tubes. I really thought he was going to say i needed a hysterectomy. He said ovarian cancer is often, most often, found too late. What he will do for me is preventative. He cannot tell me what to do. But he said with the BRCA-2 gene, it loves the fallopian tubes and ovaries. He can do a 1 hour surgery, going through the belly button and with two small slits, remove both of those. At 41 I had menopause, and that was 20 years ago. No babies and no living items in there. Take them. For those in childbearing years, I know how hard this might be. They would have recommended i do it at 45 if I had the knowledge on the gene. Dr. Lee says he partners with the breast surgeon on what they are both doing. I said the same day? He said know, just work together to cause me less stress.
Looks like I get a pelvic ultrasound now. I had one of those when i was 41. Also, I went to a new Gynecologists'. She specializes in just that. One thing I knew made her right is the questions she asked. When she asked if i had a colonoscopy, I said it is next on my list. She said, do you have an appointment? I said no, she provided doctors. She said have you had a bone test? I said no. She said early menopause means lets get one done. Realizing i was told I am five ft 4, when I had been 5ft 6 let me know another bad effect of no doctors for over 5 years, possibly more. No knowledge, no power. I think many of you know already how quickly modesty leaves you on this path. Scans, disrobing and biopsies and all.
I have posted a lot in other places, but last Monday I got my hair cut short above my shoulders. It has not been that short since likely 1984. Yep. I think i felt weird last week, as i just could not believe i had cut my hair. I have no idea when it will fall out. I am buying a couple wigs. Why i wanted to finish this with my hair story, is I have had long red hair all my life. It was a habit and i loved long hair. I wondered how I would get to the place where I would cut it. Most women i knew cut it at 60. I thought I would rather be a slim, trim women with short hair. Well, I am 60 and i did have my hair cut and i am not slim and trim. I am though, eating healthy, walking and following the directions of the doctors. When my gyno Doctor, Bracy asked if I was happy with my weight, I loved her. That is what my retired Doctor asked me when i met her. Answer questions with the truth. Now, I said, I am not. Now action can happen.
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Sometimes i wonder if anyone reads my posts. I feel like i am writing for myself. I have not written in a while as my mouse on my work computer stopped working, so i have been using this mouse on it. Tomorrow is my 4th infusion and so i thought to write.
Each week has been different. I took nausea pills and learned of constipation. I found out Maalox makes me gag, so the pill form with a D is now it. I have a reoccurring back spasm, that showed up over a week ago. It takes about 8 days to subside and by then i had only 2-4 hours of sleep for 8 days. Thinking that made my Monday Tuesday rotten this week. I get to see the MO, so i have asked that she covered my bone scan info, so i can talk of this spasm and the tailbone injury from 45 years ago that showed.
I had red spots show up my sister thought were chicken pox. My friend said allergic reaction. Tomorrow i will ask.
What i really want to say is hair is leaving fast. I had it cut above my shoulders over 2 weeks ago. I had a hard time looking at myself. I took pictures for the record. Two weeks 2 days from 1st chemo, yesterday morning, the clumps started. OUT out out in the shower. I messaged my sister to get wig shopping. We went out that morning. 2 wigs. One curly, one not. I am going to find one more, but i want to see how these two work. Acceptance is the answer and i know it. I asked my sister after wig shopping to cut my hair short. So clumps would not be the thing that came up. Rather strands.......... My hair was a particular read. The two wigs are variants of red. Those i see less often may notice. I will start wearing, but also wear the two cute head wraps. Make sure my makeup is bright.0 -
Hi K-Gobby. Wow - you have had a rough couple of weeks. I'm so sorry you are going thru this but I admire your positive attitude and your acceptance. I'll be thinking of you as you move through the remaining infusions. I hopeyou find a solution to your back spasms - those are awful and you definitely need all the rest you can get. (((Hugs)))
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Harley 07. Today was my 4th. My sister said to ask do i have to do 12 if it shrinks? To my sister i said the doctor said that studies on my type of cancer and BRCA-2 gene, the 12 are a must. When they cut them to less, it had different results. The tumor not gone or reoccurance. To kill it, 12 are needed. My MO also said after the 12, i have 4 more of another one every 2 weeks. I am still slated for a double or single mastectomy. I find the lump in later June and Sept 3, I have a plan that has proven to help cure many with my cancer. To my sister I asked do i tell the MO I want less? A different plan? I did not have a good week last week, but i have been prescribed a muscle relaxer i am to take as soon as i feel it come on again. For now, I am back to some good hours of sleep. My infusian nurse gave me a plan for 4 days of nausea pills. I will see how this week works.
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I need to ask the moderators to let me back in this thread. I am surprised how long ago i started and all that has transpired. Just reading above, I see my sisters more worried about what cancer was doing then what i was. Seems chemo and my blood do not go together.
Fast forward to today. I had the left mastectomy on Feb 9th as my chemo was cut short. My tumor shrunk by about 1/2 with 13 rounds of chemo. The Med team decided removing the tumor was best. Since my foob is small removing the tumor only would be very disfiguring. I say the plastic surgeon today and he loves what he did for me. It has healed well and looks good. I kept my same size, just no their is not sag. I will have the other removed hopefully May 31st as caution. BRACA2- now with HER2 +, means that foob is waiting to be invaded.
So after i left the doctor i realized i forgot to have him look at my leg. I finally told the CNN before i left when she asked me if all was good. She told the RN and the RN took a photo. The RN says she called the ETC- Urgent care. Please head down there. So i did. And to my surprise, I met with the RN who took my vitals again, and then the Dr. Dr. Juste. He is a regular there and i met him before. He gave me a rundown of the test he was going to do. He and i covered my tests earlier and confirmed he and Dr. Carrey are friends. I was then moved into a room, removed my pants, got hooked to an IV and soon when in for a leg ultrasound. Nice enough. The girls in that department were very nice hunter green scrubs. Very nice.
I knew something was in there by what they said and for the time they spent from my groin to my knee. I have a clot in there! I am now officially taking blood thinner shots. Twice a day for i do not know how long. A side effect i did not expect. Yet, nt something i can change. My first shot was in. Tomorrow just after 10, there I go for my 2nd once i pick up the prescription.
Dr. Just talked to Dr. Carrey and Dr Carrey says the foob surgery can wait. My health here is more important.
The journey continues...
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i noticed my update to my info does not update. My surgery was 2/9/22. i am on Femara once. Now i have been notified my surgery is postponed. I was doing my right right foob, called prophylactic as it does not contain any cancer. Yet. Brca2 is in me. How long does the chemo and targeted therapies keep me safe?
I need 6 months for blood thinning treatment. Maybe less if my MO tests and says things are clear. My body is moving the clot, so it needs to pick up the slack and do it.
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hi katg, I'm sorry you're dealing with a blood clot & that your surgery has been postponed.
You asked how long do chemo and targetted therapies keep you safe. The answer is they reduce risk of recurrence, but they do not eliminate it and a recurrence can happen any time unfortunately. We do what we can to reduce the risk and hope for the best.
I hope your clot resolves soon and you can rebook your prophylactic mx.
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Thank you, Moth. I remember my oncologist says follows ups are not as often for most, once a few years pass. Just regular tests. She then said, but for BRCA2 patients like you, with HER2+ tossed in, you will be watched more. Fits right what you said.
What i do know, is therapies are constantly coming to the market. My friend seems to have what you have had and she just was put on a radiation trial at MD Anderson in Texas. No guarantees I know, but hope. My older sister wants to take her chances and not be checked for BRCA2. 50/50 chances to not have inherited it. Our younger sister and her daughter have been tested and have it. A great way to get your current medical team to take a look in how they can keep you safe and cancer free.
All my best to your continued road of recovery. A day at a time.
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Got my biopsy back on my 2 facial scrapes from the dermatologist!! I was surprised it took over a week. COH has gotten most pathology info in a few days or less for my cancer in my body. Not the face. They also do not do the Moes surgery. Interesting. I had never heard of that surgery. Seems it is done on delate body parts. Chest, nose maybe ears? Named after the gentlemen who created the process.
Then my younger sister said she had something on her nose. Her doctor gave her the choice of a cream that is used or a surgery. She chose the cream and said she is fine. Her doctor said ok. Really? My doctor was trained on the east coast. Is mine deeper on my nose? All i know is i am driving to another place to have it done. I need to see if my insurance covers them before i go.
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Found out talking to the doctor's nurse, my sister likely does not have the same basal cell size. I go May 1st. My older sister today spoke of the process. She had it done on her face. This is the sister not wanting to see if she has the BRCA2 gene.
I had my 2nd infusion of Herceptin and Perjeta. All i know is 2 hours later i am super tired. I get to eat snacks at COH, so i had a tuna sandwich. Good as i did not each lunch. Sadly, my appointment was at 3pm, but by the time the med finally arrived it was 4:30pm when i started. It was ok. This time i brought my phone charger, so i was ready to go.
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I had the MOH's surgery for the basal cell on my nose. Very interesting. Very numb it was and a very good young doctor. I said as i age, everyone looks to be 20. She said 41. Highly educated. It is done in layers and i had 3 layers. The 3rd was just a bit. I took off the pressure bandage and see little blood. just puffy a bit. Another doctor visit i put off for a few years. I regularly went to the dermatologist, until i lost my insurance and the doctor i loved retired. Who did i hurt? Me!
Now i deal with the blood clot too. Stopped my blood thinner for a few days while this new surgery area heals.
I did go to my breast surgeon. It was good to see her. I also had gone to get a mammogram, likely my last so she could check if i am clear. For today, the cancer left with my left mastectomy done in Feb of this year. She did say she will be moving to a new hospital to their new cancer wing. I told her i will go with her. I would also like the plastic surgeon who does surgery at that hospital too. I told her i would like my team for the 2nd side.
She needs to factor in my DVT timeline, talking to my MO and the Plastics Doctor. Dr. Amy is going to Europe for 3 weeks in June, before her new job starts. I would prefer June, early July. I have a "Work conference in late July in Vegas", so that is out. Plus, i need 2 weeks of recovery time after the surgery.
I told her i will await the dates. Once you have doctors you trust, you do not want to leave. I love my Medical Oncologist too. She is the one that will find the therapies to keep my Brca2 and HER2+ mutes from reproducing. My breast surgeon only had 2 to work with. One out. then the next. She will be looking out for me as i have and will always have the BRCA2 gene that needs watching. What that looks like is likely ultrasounds and MRI's. And possibly more as the scientists learn more about treatment.
For now, keeping my nose at it heals from scaring and turning white. Sunscreen and taking care of myself.
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I really wish more people shared. I am the last poster on many topics I enjoyed ready on. I suppose I need to check for new topics by new people.
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My older sister did not get tested, then recently was filling with water in her abdomen. Long time problems in her tummy. ABS she told me recently. Finally she got a CT scan. Something on her ovary. True to COH, with in 2 weeks, she is getting her 1st of 3 chemo infusions. Likely AC, but she will not tell me. She only has cried around me once before. On the phone talking about this twice. Fear is filling her up. She told my younger sister she is amazed I walked through this by myself. Covid meant no visitors.
I am praying for her. We cannot make it easy for anyone else. Each of us must walk through it and feel the feelings. She told me at first i would not understand as it is her ovary and it was my breast. True. Now though, chemo and its effects will be the same. Side effects we do not know until we each go through them.
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This is crazy. I just typed a who bit and it is gone.
My sister gets her 2nd chemo Saturday. She is getting taxol/carboplatin. Two more three weeks apart. Hysterectomy and then I believe she said 3 more rounds for 3 weeks after surgery. Will she do it?
She has already begun giving me advice on growing my nails. Very interesting. She has not lost all her hair yet, she has cut it she said. Expects to cut it more. Took my invite to visit the "Positive Image center" at the COH. I told her they cut hair and sell wigs and other items. The two who work there and the volunteer are very kind. I wish my sister let me be part of her journey, but it does not look promising. Her husband seems to be the one. I will add she has not told our oldr brother. I mentioned it to him as he has the BRCA2 gene mutation and needs to know one more sibling has cancer. He had melanoma removed.
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I need to add. My sister seems to think that if she knew mom had BC and lymphoma before, she said we all could have found something out and taken tests. Really? The only reason why any of us know about Brca 2 is i did the genetic test, which got 2 other siblings and one niece tested. This sister did nothing until she felt so bad she got to a dr. who sent her for a CT scan and they saw a growth. She was thinking she just had tummy problems.
It is highly unlikely she would ever have been tested back in 2016, when she would not do it in 2021. I shared what i found, but noone listened. For me, this is a learning curve for anyone who reads my post. What has happened in your current family or what happened in your birth family. My sister had 2 years and she chose to roll the dice. How come her sister's cancer never sent her to be tested?
I believe writing and telling someone in person allows me to let this go. Our Mods posted the file above. I am sending it to my sister. I am not responsible for her finding this growth.
Each of us gets to feel the feelings on this journey. We make the choices. My sister cannot hear me. She is looking for her own path. Finding answers for questions that do not have an answer. Thinking if she only knew is so sad. The fact i never had a mammogram never came to my mind reading Mom's doctor form. Never. I never equated Mom's cancers to me. I only thought I may get skin cancer.
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I'm so sorry, Kat, your family is going through this. Genetic testing though is a hell of a thing to contemplate. My mom was diagnosed with ovarian cancer and I knew I should probably get tested as a result. It wasn't an absolute must since at the time she was the only one in our family diagnosed with it but I knew anyway that it would be smart of me to do so. I didn't though for six years. Lots of reasons why but most of it came down to fear. How would I handle knowing I had a cancer causing gene? Would it make me feel empowered or weakened. For those six years the answer was weakened. Finally one day I knew I could do it, that I could take whatever I learned and run with it. So I finally took the test. For me I was negative. But in saying that I understand why you sister didn't get tested until she had cancer herself. That fear is crippling. My brother still hasn't been tested and won't. He accepts that he might have repercussions from that decision but he just doesn't want to deal with a positive test. I accept that.
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kaynotreal name.
I understand all of you and the choices you made. I am glad yours came up negative. Thank the Gods! For me, I found the lump that led to the genetic test. Had I not been in a research hospital, I may never have been asked to take the test.
My sister has now talked with someone in genetics. Her MO, Dr. Wang who she trusts implicitly it seems, has asked her to take it.
As to empowered or weakened, I felt empowered. So many choices we do not make are behind FEAR. I think you found out how-to walk-through fear. Each of us has the choice. You did it and maybe one day your brother will. Until then, just go to regular doctor visits.
Take care of your self.
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