Rough patch

[harriet91]

Hi everyone,

Been a bit of a rough patch recently. The quick summary is that since my MBC diagnosis in April 2016 I’ve progressed 5 times. This includes the recent news that I progressed on Doxil after only 3 cycles (new spots on liver and lung) and full brain mets (brain, skull, derma surrounding brain).

We are dealing with the brain mets now with full brain radiation. I’ve completed 7 of 15 sessions. Then will go back on chemo immediately to deal with the rest. I have to take steroids for the brain and I’m really hating the way it makes me feel. Then I have to take sleeping pills to sleep. I don’t think my body know which way is up.

I know this is a bump in the road, that they are working to get me off the steroids, that I need to work the plan. I just want to feel some kind of normal. I would take the nausea I felt on prior protocols.

Im meeting with the Palliative team and know they will be good partners to help me find a normal now and going forward.

I’m so inspired by so many of the members of this group that have lived for decades and the support we all provide one another. I know that we have all benefitted from research and there are still many options available. I’m just tired of the roller coaster and would love to get a good run of something soon.

[Crazydentist]

Hello Harriet

You poor girl having to go through this uncertain phase of your mbc

Just trust in your oncology team and accept whatever treatment options they suggest..and there are many!!

We’re lucky ( not the right word I know) to live in an era where new and different treatments come up all the time.. the nurse at the cancer unit where I go said that almost every week there’s new stuff being tested and in the pipeline

I have my CT scan review next Wednesday and very apprehensive

All the best

Barb xx

[harriet91 in reply to Crazydentist]

Barb,

Thank you for your reply. I do agree we are lucky with so many options. We stand on the shoulders of the men and women who have gone through this diagnosis and participated in trials to provide so many options. Despite this diagnosis and the tribulations, I still consider myself lucky to be dealing with this in this day and age when there is such an investment in cancer research and that i am able to be treated at an academic medical center that has a full compliment of resources.

[mariootsi in reply to Crazydentist]

Barb good luck with your scan! Will be thinking of you and will visualize a good outcome!

[nstonerocks]

Hi Harriet

Sorry you are going thru all this. I had chemo, Abraxane, for lung Mets with good results. Maybe after tx for the brain mets you can discuss w your doctor. Praying for you. 💕

[Nelsonyong]

Stay strong and take good care!

[Burgerde]

Good morning Harriet. I also have progressed after my last set of scans. I was diagnosed 8/2017. I had multiple brain mets and eye metastasis in my right eye at that time. Hang in there. The total brain radiation is not easy. Be sure you ask many questions because I found they definitely tend to down play side effects. I had many more from TBR tan idid from chemo. I am just now feeling a little better. To be on the fair side everyone reacts differently and hopefully you will have an easy time. Most of mine started after treatments done. I had multiple small mets all over my brain. My thoughts and prayers are with you. Let me know how you do. I have my third f/u brain MRI Monday and am anxious over results!

[harriet91 in reply to Burgerde]

Thank you for your reply and sharing. Those scans man they r always just a kicker and I hate MRI’s. At least modern medicine gave us Ativan! I have 7 more sessions to go and the fatigue has settled in so listening to my body and resting as needed. Sending my thoughts and prayers that your scan results are good and you can breath a sigh of relief!

[kduck]

I'm very sorry to hear bout your new dx, hang in there like these women in stated there are so many new treatments out there, my doc to has said there where two new drugs coming for mbc. You and every woman and man will be in my prayers.

[mariootsi]

So sorry for your roller coaster ride! Stay strong. We are all here for you! We are praying and hoping for a turn around and normalcy. I'm sure the palliative care team will help you! We are here. Hugs!

[Debdavenpo]

Hi Harriet,

I’m so sorry you have had to deal w all of this. I just progressed on my last regimen so have started another one. It is hard when you have the turbulence versus when we are in a routine and things are working. Many hugs and prayers your way. Everyone in this group amazes me and i know we all help each other deal w what comes our way. Thinking if you 💞

Debbie

[RLN-overcomer]

Greetings: Sister/Warrior I pray God will direct the medical staff, that will have the restorative treatment for your healing, as I pray the same for my sister in Christ who is fighting metastatic brain cancer. She has been in, and out of Mount Sinai Hospital. She is growing stronger, and stronger in her relationship to God.. She has had targeted brain radiation treatment, I.V. chemotherapy, and now her doctors don't think she will need full brain radiation , since this targeted radiation treatment along with, now oral chemotherapy is working, and shrinking the tumor to almost no visibility. She too has gone through a few difficult days. I just got off the phone with her as she was preparing to leave Mount Sinai Hospital, after having a Dr.s appointment to get an injection to bring up her WBC. She misses attending our member church, and wants to come , but at this time she shouldn't be around large groups of people. The church we attend seats 3,300 people, and is being expanded to seat even more across the street in an over-flow building.

I wanted her to join this HealthUnlocked group, but she is not computer literate. I am hoping/praying her grand daughter will show her how to use the grand daughters computer, so that she will be able to see the webcast for Sunday, and Tuesday Bible Prayer services .

Prayer Warriors please pray for my cousin who has stage IV cancer, along with other medical problems, and is now 90 lbs. My cousin is very weak. He is refusing to go to the doctor for treatment. I am a testament as to what God can do. With God all things are possible. XoXoXoXo

[harriet91 in reply to RLN-overcomer]

Mynthoughts and prayers go to you and your sister and cousin as they go through their treatment and care. I’m happy that your faith and your community provide you with the love and support you need while caring and helping your family.

[SeattleMom]

Hello, Harriet! I've not read any of your posts before and am so sorry to read of this unfortunate turn in your condition. I will say prayers for you and hope that you are able to tolerate your new treatment. It sounds as if you are a "take charge" kind of person and that is what all of us need to be. You are such a great reminder of that! God bless you and may He shine His healing light on you every day forward! Linda XO

[harriet91 in reply to SeattleMom]

Linda, you made me smile as yes I do come from a long line of take charge women in my family. Sometimes the asking and saying yes to help is harder than the treatment and side effects! These reply’s are helping get through this little dip and I appreciate them greatly.

Harriet

[Clair19]

Hey Harriet, I’m sorry I just read this. I know this road is a bumpy one but things seem to go up and down. You have been through a lot, time for good luck. The Doxil worked fairly well for me,just kept things stable. I can’t seem to tolerate Ibrance. They will find something that will work, just give it time. Try to stay as busy as you can and try to stay around family. I know you have been through more than most but you seem strong and positive. I just prayed for you and will put you on our prayer list if you don’t mind! 😇🙏❤️

[harriet91 in reply to Clair19]

Thanks Clair! I finished my radiation on Tuesday. Lost my hair so dealing with that reality. They have been tapering me off the steroids which has helped a lot as I do not enjoy the steroids and then having to take something to sleep. I felt like my body did not know which way was up. Right now I have a stretch of days where I don’t have a dr appointment and I’m very happy. I do have a great support system near and far so it has been very helpful and I know enough to allow them to help which is difficult for me😏. Thank you again for following up!

[Clair19]

Oh your so welcome! My Mom was in the dark ages when hers came back in 1987. She was only 30 when she was diagnosed. She lived 22 years. I did not think I would get it because Her2 Negative is not usually hereditary. But I did, at least I got a 17 year break. I’m blessed in that. I’m sorry your going through this rough patch, however I think your strength and family will pull you through this hard drive. Go buy a fun wig!! When you feel better. And enjoy your favorite dinner and drink what ever that is. When I’m stressed I have been eating rootbeer floats! I have gained 10 pounds but lost 4 because I started thinking how crazy 😜... However the extra weight helps with Faslodex injections.

[harriet91 in reply to Clair19]

I love root beer floats! Was just talking to a colleague another that so funny!

[Clair19 in reply to harriet91]

My Mom started me on them, however she was always a size 2 her whole life. I was never that small, up to a size 12 at my highest. My weight was 134 when I got diagnosed last year, I lost 10 through Chemo at 124 considered overweight! Those darn but yummy root beer floats.. Heeeee now 129, I’m going to try and stay to one a night.😁

[harriet91]

I love that plan! You have to find the simple pleasures in life!