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Just diagnosed, and seeing the oncology doctor Tues, July 20th

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  • kaynotrealname
    kaynotrealname Member Posts: 406
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    I did finally figure out how to walk through fear. It's to stay solidly in the present. It took a while though but I'm so grateful I did so much mental work before I was diagnosed myself. The actual cancer road, unlike the feared cancer road, has been much easier. As far as my brother, I love him and will support him as he goes down his own life's path. I wish nothing but the best for you and your sisters.

  • katg
    katg Member Posts: 214
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    Thank you kaynotrealame.

    Beautifully said. All that you wrote!

  • katg
    katg Member Posts: 214
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    Today I am 63. Grateful to have been stage 2 and that the doctors helped me walk through these years.

  • katg
    katg Member Posts: 214
    edited November 2023
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    My cat laid down on my lap top once i got up for a minute. Came back and my writing was gone. Seems I had frozen keys, so i turned it off and put it away. Opened it this morning and realized i never got to send it.

    A great post it was.

    Narrowing it doen to the last part. My sister asked our estranged brother for our Moms medical records. My sister is trying to find out if Mom is the Brca2 donator. The fact that my genetic doctor said it was not enough.

    What did she find? Our Mom had first been diagnosed in 2007, then again in 2008. Her older brother died of melanoma on his head. My sister thinks that and my fathers cancer experience in 2000 soured Mom.

    She had chronic lympatic leukemia, a node was positive near her pelvis, breast cancer and cancer in her kidneys. Not deciding to do treatment in 2014, made 2016's CT scan showing mets in her lungs. i found the paper in her nightstand that spoke of the chronic, breast and lung cancers after she was hospitilized.

    When my Mom was taken by us to the hospital one night in early January, we waited in the waiting room until she got her spot on a temp bed. As she laid down there, I recall my older brother and possibly my niece with us. Noone recalled seeing my Mom's face once she got in that spot. I looked at her, she looked at me and in her eyes I saw "The gig is up" This is it. She was at that hospital for a few weeks, then moved to a rehabilitation place. Because she did not say a single thing to any of her 5 children, only her doctors knew this condition. Now it all made sense. Mets. I read this all over breast cancer.org. Mom' melanoma in 1959 in her right armpit area. It was in lymph nodes and the scar area was a reminder every day. To us, she never detailed the treatment.

    My sister now believes Mom gave us the Brca2 mutation. I am just thinking how Mom had all this knowledge from before 2007 and she never said anything. Her childhood friend passed away before this. Dad in 2000.

    I am grateful my friend told me about her cancer and in all the places where mets showed up. She told me about breastcancer.org. I told her first about my cancer, then to my sisters. Telling someone makes it real. Writing about it makes it real to me.

  • kaynotrealname
    kaynotrealname Member Posts: 406
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    I asked for my mom's medical records, too. No surprises like with your's but in researching our genealogy I found she had a great aunt with ovarian, another great aunt with breast, and a great uncle with colon. All of them were siblings. They found a brca1 unknown variant with my aunt, my mom's sister, and I'm thinking that must be the culprit at least in our family along with the pathological Bard1. Genes suck. So, so sorry for you mom. Cancer is horrific and to have so many I know she went through it. I hope medication works wonders for you guys. In the meantime you can at least warn your children.

  • katg
    katg Member Posts: 214
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    And my blood laughed. I mentioned in very early August to my NP, that my white cells are going down and not up. She set another blood test for today. My MO has changed as my original went closer to home at a new upgraded hospital down the freeway. My NP is on pregnancy leave. So today I got a different NP who reviewed my blood. She asked me if I planned to leave this hospitals care. It was noted that my plastics doctor suggested I stay with my medical oncologist who treated me at first, as she knows my care and treatments. My new doctor has never met me as I am off active treatment. My NP now on pregnancy leave was the one i saw mostly after my surgery in Feb 2022.

    So I told this NP a bit about my family and Brca2. Found i never met her as she is in the neurology and incontinence area. Not usually my area of cancer. She was only there to review my blood results and tell me the PA that I am being sent to the hematology department. I need the hematologist who specializes in what is going on with me. Geez! More will be revealed once I see them.

  • katg
    katg Member Posts: 214
    edited September 2023
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    On August 31st I had a blood test. Nearly at the end of active treatment I find my white cells diving are only concerning to me. The fact that the Hematology department has been sent 3 messages to contact me, nothing has happened. I need a specific hematologist. Are they all that busy? i messaged in the portal and the one remaining NP that has treated me all along set me up for an Ultrasound, that was to be Oct 10 at 6am, but the NP got me in today, calling yesterday at 2pm. The US tech was very nice. I really hope the Plavix has been working. She said of the blood thinners, it has the most strength. I am hoping the scan info is posted tomorrow. The why I have a blood clot is not something I will know. April of 2022 after my 1st surgery in February of 2022. I never thought a clot would be in my story and that it did not dissolve or breakup with the Eliquis after 6 months. 2nd surgery in late December I got the shots of blood thinner I gave myself. The Vascular doctor i saw in early May this year, said in my 2-month follow-up it was better. I believe his NOP noted in the portal US's are not done after this time. I thought that was odd. Really? I just keep wear the thigh high stocking until? The Plavix he said for sure 3 months, as i talked about taking it forever. Forever could be 6 months. Honestly, my platelets are low, a 200 below the number i have had for the 25 years i donated platelets. It scares me. Is Plavix the reason it has gone down little by little.

    I only saw that Dr. once, so I will likely not see him again.

    For my white cells, those have been going down each time my blood is drawn, for the last 4 months. Sadly, active treatment means no blood tests. You get used to them. For a year I had one at least every 3 weeks. Sometimes more. Hematology needs to call.

    Maybe tomorrow? It is September 13th.

  • salamandra
    salamandra Member Posts: 736
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    I just wanted to say I am reading, and thank you for sharing your stories. You are going through a lot, but you are still going. Wishing you better.

  • katg
    katg Member Posts: 214
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    Thank you for reading Salamandra.

    One more story. I went into my portal and ask the one NP i have seen for 2 years to review my blood clot as i did not want to be on Plavix forever if it was not working. I would just keep wearing my thigh high stocking. Well it was posted that night. She put a note in to let me know, Seems the flow is better, but it is not gone. Plavix continues. I really wondered why the vascular intervention dr. said no ultrasound would be needed. How do i know if the blood clot is breaking up?

    I am calling the appointment desk tomorrow, as Hematology has not called. Are they overrun? I am wondering. I feel like maybe i am pushing too hard? Well, my white cells are going down. Not my imagination. I am calling again.

    Now a bit about my sister. I have one older and one younger. After I was diagnosed with Brca2, i gave the family letter to my 4 siblings. My younger sister got genetically tested and also has Brca2. Her daughter does as well. My older brother was tested, he carries it. My younger brother has been estranged since our Mom passed in 2016. I do not know if he has been tested. So, my sister has 3 out of 5 siblings with the mutation. She did not want to be tested. 1.75 years later, she has Ovarian cancer. I hope she follows the doctors. She told our younger sister 3 chemo were hard, 3 weeks a part. She will have surgery and ask the doctor for maybe 1 of the three chemos. WHAT? She does not went to be tested for BRCA2. I must let it go. We can only control our own choices.

  • katg
    katg Member Posts: 214
    edited November 2023
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    I shared in Fridays meeting, but i got to see a Hematology Dr on the 27th. Dr. O. He did not po poo what i asked, he reviewed my history with my chemos, my other drugs, my pancytopenia that stopped my chemo infusions. He was scheduling me for a bone biopsy and aspiration. He explained what the process was and how the results will tell him how my blood is functioning overall.

    I see the Dr. for his report on the 27th.

    I had the procedure on Monday. Baring ones bottom 3/4 with 4 viewers is surely a delight for all, but necessary as they complete the job in the hip area. On my tummy I was placed. The needle device is not a piercing pain, but a pressure. Centered down. First i got the fluid aspiration, then a bit deeper with another needle into the bone. Seems I got 2 great specimens. They asked me how i was doing a few times. One time i laughed and they said that seldom happens. I told them it was uncomfortable but manageable. THE PA was from India, and she was good. Very funny before and after the process. Real and calming in nature. All business as she worked. For me, it made me more comfortable. She explained the goal and how they would extract both products. Under 10 minutes.

    My sister has her surgery tomorrow. Removing lady parts, 5:30am arrival. I pray she comes through it. Stays in the hospital until she is stable.

  • katg
    katg Member Posts: 214
    edited November 2023
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    I am not so sure what is happening on these boards. In the old format, I think many were used to the way it looked, but i have read a number of times, that people cannot find the threads they followed. i do not know on my own how to encourage posts. This is my own story right here, so it may just be me that reads it.

    A few reports were posted on my test on Oct 2nd, and the best words every to see are "unremarkable". No evidence of leukemia. All i know is in a couple days the Doctor will give me the medical explanation of what i read. All in all, it looks promising that for today, maybe the worst is the mild leukopenia. Low platelets and low white cells. He did not order another blood test, so I would like to see if going off Plavix helped. I know i wear my thigh high stocking at least 4 if not five days and it does help with circulation. On that sides foot, i can see my veins pronounced. My knee looks to have a pronounced spot today, so i will check tomorrow. I do see the DR. Friday, so I will ask him.

    As to my sister, she had a complete removal of all, plus her appendix and spleen. She never told me about the appendix, but she told my sister. Her husband told my sister on surgery day that it had spread some. Really? A number of days later my sister said she was stage 2. My younger sister said either our sister or her husband said the CT scan showed a little involvement in the lymph nodes. The truth? I have no idea. My younger sister says the older does not want to feel so sick. Does not want the three chemos planned. To me she said she is seeing the medical oncologist on Friday. She will listen to him.

    Me, I hope she does. He will cover what comes next, how important it is to do all three chemo's. Did she take the nausea pills? I have no idea. Did she lose her hair? I have no idea. Was she wearing a baseball cap with bangs she attached? I have no idea. She shared different things with both her sisters. When my younger sister said she was looking to have her breasts removed, this older one who just had ovarian cancer said it is too painful. Really? I had a nerve blocker and remember little pain. Numbness was the order of the day for many months. Three sentinel lymph nodes removed.

    Powerless. I am powerless over my sister.

    I reached out to my breast surgeon, and she replied, but it has been a week and I think i need to call her office. I was supposed to see her every 6 months. I have not heard back from her.

    Advocate. I attended the webinar last week and heard plan, after care plan.

  • katg
    katg Member Posts: 214
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    I joined the Mayo clinic boards as i was checking the internet and kept finding research and news from the Mayo. I did not believe these boards would become silent here on bc.org. I get lots of replies on that board at Mayo. On bc.org, the exercise and cats plus peaceful contemplation have many regulars. I will come here another time. I want to see if there are new posts here.

  • moderators
    moderators Posts: 8,085
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    We're so sorry that it seems like others aren't seeing your posts, @katg - we've been following along as every time a post is added in any thread, it does to the top of active topics. But it could be that some are just checking their favorited threads and not the active page. Glad to hear your sister's surgery went well, and "unremarkable" is a very promising result indeed!

    The Mods

  • katg
    katg Member Posts: 214
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    I re read my post. My sister did create the baseball cap with her hair. My guess. She helped me create table decorations 2 weeks ago and was wearing a scarf. She does not have hair. She also let me know 2 days ago that they want her to have 3 more rounds of chemo. She spoke of our shared OB surgeon specializing in cancer as kind of soft. Deferring her treatment to the MO. My sister told our younger sister the two doctors teamed up to talk to my sister and her husband. She felt they were wishy washy. Really sister? She did not say the exact same thing to me. What I thought was 2 doctors who have treated this cancer possibly a thousand times collectively with some of the best MO and research to back their treatment plan. But here they are sitting with 2 vaccine deniers. A patient who does not want the genetic test knowing 3 of her siblings carry the genetic mutations. Really sister? She thought she could visit her daughter over Thanksgiving. She could not believe on this visit that they had scheduled her next chemo this next week.

    It is possible, that she will not get cancer again. That the chemo she consents to doing, all three, will kill any remaining cells. The pill they want her to take every 3 weeks for one year is not looking good. Side effects. Cancer fighting foods are the plan. On this I said I would join her. I also told her that based on my genetic test and bone marrow biopsy I will follow the doctors next steps and add the food list she gave to me. Healthy living or avoidance of big stress cannot be changed from the past. That is done, done and done. For me, she has not addressed her life. Her ongoing tummy troubles and the cancer in her body.

    As for me, On October 27th i saw the Hematology Dr. Unremarkable for now. Actually the 2nd genetic marker on my genetics report now comes into play. Seems the TP53 with the genetic markers are precursors to Leukemia. Just for today, my push to see a hematologist was not wasted. The Doctor said it was good my doctor sent me. Upon my consent on October 27th, I joined the registry for the transplant donor site. My siblings have BRCA2, so they are out. Does my younger brother or sister have it? I do not know. I am getting blood tests every 2-3 months to check my numbers. As of today, my white cells and platelets are still low. I noticed before that my red cells were good. Yet, one of the components in those red cells were some irregular sizes that were on the high side. All of my blood numbers bugged me. Once my NP went on pregnancy leave in late August, I felt on an island. I had a new oncologist assigned but i did not insist that i see her and stayed with my NP from my original MO for my after care. So when i message on the portal a nurse in that department sent me to the vein doctor i saw for the blood clot. Really? I saw him once at the start and the last time when he gave me 3 months of Plavix and the continued use of the thigh high stocking.

    He is not not my regular doctor. I message his office anyway and his nurse put in an order to see a hematologist. I called a number of times over a few weeks and by the 3rd week i got someone making appointments who got me an appointment. Late September. A hematology doctor specializing in Leukemia.

    More reading shows leukemia and blood cancer has a good amount of occurrence from chemo and Lynparza drugs. Knowing this, I suggested to my sister that she get those other choices she is requesting. Based on my genetic results and treatment I will never know if I would have gotten leukemia without the chemo and Lynparza as I am on that path now having the treatments. This new Doctor says we need a donor with 12 matching markers, but 11 markers is something they can work with.

    Time will tell as we move into 2024.

    Later on October 27th as i looked at the "conditioning" done for a bone marrow transplant. I will quite possibly lose my hair again. Geez…….. I will be looking for a wig of my today hair. IT took 2 years to get what i have got. So just for today, it is on to my day. Sunshine, cool weather and a salute to the Veterans!

  • katg
    katg Member Posts: 214
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    Time has flown. I have much to do at my house to get ready for this new adventure. I found out on March 13th, that what i read from my December 12 appointment is right. The donor for me has been found and now has been tested and is a perfect match; a 25 year old male. Crazy.

    Something tells me that as a platelet donor for so long, I knew my blood numbers. All those years they were stable and steady. For donations, I had doub le the average person until the machines were developed that took more out of others. The whole donation process is interesting. It prepared me for the needles i would get during my breast cancer journey. Also, as i received 2.5 blood donations and 1 possibly 2 platelet, I know the average person like the donor i was was grateful their product went in someones body.

    I was never sick, so when my treatment of lynparza ended in June of 2023,
    I was looking forward to seeing my numbers climb back up. They did not. My platelets keep going down a bit. The white stabilized, but at 290 or so. This was causing me concern, but i was out of active treatment and not really seeing anyone regularly. So i messaged in the portal. The Drs department i had seen for my blood clot that was not clearing out. They made the call first. I called back three times to check on if a hematologist had been located.
    I got that first appointment in late september, a bone marrow biopsy in early October and a doctor follow-up some items were found. I went from unremarkable from the results i read, to a couple chromosomes that coupled with a genetic finding leads to leukemia. So did this have anything to do with the chemo i received? Or straight genetics.

    Chromosome 5 and 17, defining the TP53 gene that for me has mutated. Fortunately no "blasts" or another thing were noted in my marrow. I do not currently have MDS. So now what my Doctor said in October. He asked if I would like to go on the donor registry. I said yes. I knew I did not have to do it if they found someone. The Dr asked to see me in 2 months.

    My platelets dipped again, but the other blood numbers were mostly good or the same. This visit in December, he told me at least 6 matches were found. I have to be honest and say I just did not freak out or do anything but just say ok. What comes next? He said do not worry, just stay healthy, eat well and stay busy. Do not spend time worrying about what comes next.

    Feb 13, I did have a 2 week cold in January, but have stayed stable. The doctor asked if i am having any new symptoms. I said i would be seeing the oncology nurse as my left top of write to my hand is super painful hurting. This was a reminder he is about blood cancer, not joint pain. Today Feb 18th I look forward to me visit on the 20th. I was finally asked by the doctor if I want to proceed or wait some more time and see what happens. What came to me and what i said is that you are scientists and doctors looking at blood results from my body. With my genetic BRCA2 mutation and this once unknown 2nd variant turning out to be one of the two mutations found in my body leading to leukemia leads me to think waiting may not be in my favor.

    They will know contact the donor people to see if my donor is available in April. 2 months. Oh my. It is real. This Donor has 0 blood, which we know is universal. My blood is A+. Not after the marrow transplant. The hope is i am healthy enough to take the conditioning chemo and get the new blood cells that will give me a renewed life.

    To think my hair was finally growing, my nails too and my mind was coming back together. Then ding ding ding, my sister has Ovarian cancer and I get to have a bone marrow transplant. One of my siblings started a text thread that included my brother who is estranged. This brother works at the City of Hope in the Machinists department of the hospital I have been treated at for 2.5 years. My three siblings know what i have, but he does not.

    For here I have all of you that know all about breast cancer, I found the May clinic when I was fist looking up bone marrow stuff. I have found a thread of those who are getting what i am getting. One who was treated last year at Cedars Sinai. He has not written in a while, but like here, I hope it is because life is on, and he is ready.

    Be good to yourselves and please do something you have always wanted to do.

    Katg