2017 Diagnosed-- A Place To Share "Whats Next"
Comments
-
Good to have a plan in place DodgersGirl! It sounds like potentially some quick relief once rads starts and you start blasting those bad cells. I am encouraged with the longevity of some of the posters with mets on these boards. Some have been here many, many years and ibrance helps that even more.
I find it interesting that you will be on your back for the treatment. I guess I would have assumed you would be laying on your tummy. Praying rads and the ibrance does the trick for you and gets you back to NEAD.
0 -
DodgersGirl, I am so sorry to hear your news. I join Scrafgirl, Scottie719, Annbee, and your many, many fans to wish you a lovely Christmas, an easy and successful RADS series after the holiday, and an end to that nagging pain. You are an amazing person and we love you! Sending good thoughts and prayers your way.
0 -
Georgia1— thank you for the well wishes
0 -
MO’s office called to tell my Ibrance had been approved. Still waiting to learn my co-pay. Fingers crossed it’s something I can swing.
Thought I would have a rads schedule by now as RO wants to start Monday. This means I am still in limbo. I really want to be moving forward with a plan.
Good news is I did get all the Christmas gifts wrapped Sunday. Typically on Christmas Eve I am busy but this year, I am mostly in my recliner. It is really important that I don’t do anything that can lead to spinal cord damage. Family is stepping up and handling all the holiday prep needed today.
Also still waiting on PET scan results. Right now I know I am Stage 4 but have no idea how limited or wide spread mets are. Limbo land.
Trying not to wonder if this is my last Christmas... realized that thought will probably be part of each holiday going forward until I just get tired of thinking that way.
We have been thru a lot with all that comes with a BC diagnosis. I thank you all for being will to be part of my continuing journey. Not feeling so isolated and alone is a great gift each of you provides. Thank you!!
For those celebrating— Happy Hanukkahand Merry Christmas
0 -
DodgersGirl, Your comment about wondering about holidays going forward echoes where most of us are, at least on occasion, and I'm sure especially so for you with your recent news. I had an unexpected and shocking headset check this past week, when I heard that my dentist [in the prime of his life and in phenomenally good health], went to bed Wednesday night - and didn't wake up in the morning. It reminded me that there's not a person on earth who knows what tomorrow holds, and that to the degree that I'm able, I need to try and not get ahead of the story. Easier said than done, at least in my case, but I thought I'd pass along my "note to self". Great news about the Ibrance, BTW.
0 -
Scottie719– thanks for the reminder that each day is a gift to be treasured and no guarantees about there being a tomorrow
0 -
Happy New Year.
I have the results of my PET scan. It doesn’t list a lot of specific bone mets but says they are scattered throughout my bones. 😞 seems the highest FDG readings seems to be in T8 in spine, which I knew was there from MRI and from right pelvic/thigh area which I did not know about other than I have had right hip pain for years from arthritis.
From PET scan, I am now being scheduled for biopsy in right pelvis plus an MRI of the lumbar- pelvis region. I had just returned home from a brain MRI yesterday when MO called to tell me about the new tests. My heart sank with the news. In the last couple of weeks, I have already done 2 MRIs, PET scan, and rads simulation. Now another MRI— sigh. Not claustrophobic but being flat on a hard surface for an hour is painful.
The MRI yesterday was a brain MRI. Hoping to catch a break and find no cancer there.
Good news is nothing in the liver!
Returning to work tomorrow. Hope I can get my head back into my job.
Thought you all might want an update. My advice to those getting blood work regularly, would be to watch you ALP numbers. If they start to climb, ask MO to find out why. It could be mets
Happy New Year to everyone. May your health remain cancer- free thru 2020.
0 -
Happy New Year
Dodger girl I am so sorry you are going through this. I am thinking of you everyday and praying for good news. Liver is great news. Do your best with work tomorrow. I still have labs done every three months. I get Faslodex injections every month. I am going to go back and check my ALP. All my labs were normal when I was first diagnose. Not sure I trust them? Thank you for the update and please keep us all posted
0 -
Dodger..I am wordless. I am so sorry for all of this shit.
0 -
DodgersGirl,
Glad that you were able to embrace time with your family over the holidays and that your family was stepping up to help you. I just dropped my sister off at the airport this evening (she's been visiting since December 22). So, I am just now catching up on things here and on email.
That is good news about Ibrance, as I have heard that the cost is astronomical without coverage! So, now I hope that the co-pay is decent!
Great news about the liver, too! I know that the news from the PET scan is disappointing, I am sure. Yet, from what I have read, bone mets has a better prognosis than mets to other areas. Praying for good results from the other MRIs.
Thank goodness you are not claustrophobic, given the number of MRIs you are undergoing! I am HIGHLY claustrophobic—just seeing claustrophobic situations on television or in a movie makes me stressed! I have been thinking about getting some cognitive behavioral therapy to deal with it, since I am certain that an MRI is in my future. I've done two MRIs in the past—both large bore and open—and I still had a hard time!
No need to thank us for being a part of your journey. You started this thread, so we should be thanking YOU that we have a place to come together to share and support each other. As I said before, I feel that we are all in this together...for the long haul.
Peace and blessings to you in this new year!
0 -
Well said, Scrafgal - We indeed have DodgersGirl to thanks for our place to connect, and keeping up with our 2017 group is a safe haven for all of us. It was three years ago today that I had back-to-back imaging and a biopsy, but I knew I was cooked when one of the techs gave me a hug when I was leaving and said "stay strong". Three days later I received my official DX, and I still can't get my head around the fact that three years have passed - Seems like yesterday, and 100 years ago. Such a weird trip. And one that only we truly "get". Onward - wherever that may be.
0 -
Thx DogersGirl about the ALP & the updates. I'm fighting my MO - trying to get bloodwork. You would think they would want to keep ahead of everything. When I have an MRI, I take some Ativan, calms me down, relaxes me, not that I'm claustrophobic, just that dang hard table!
0 -
rljes
I have gotten the ALP on every blood test at my cancer center, before, during and after chemo. I thought that it was standard...I wish you well on the bloodwork fight!
0 -
Had my lumbar MRI Friday. They had a last minute cancellation Thursday so they called to see if I could do it Friday. This MRI was feet first. Table was just as hard. I had trouble getting up from the table. I have been told to get help so that I don’t damage my spine trying to do it myself. I think the people in the MRI room weren’t pleased when I asked for help.
MO’s office called that afternoon to say my pelvic MRI has been approved by my insurance so I will get that appointment made Monday. And my bone biopsy has been scheduled for next week.
Pain in my bones is increasing. Feels like my right leg is going to collapse. And left shoulder still hurts from my earlier MRI. Can’t believe how quickly this all turned around. I feel like I am 95 years old.
Hoping things will turn around back to before St4 dx once I do rads and start Ibrance
Ibrance is very expensive ($14,xxx) for 21 pills. Am very blessed that insurance covers a lot of that expense.
I am making a bucket list of places I want to see. Am hoping to travel once the pain is under control. MO told me mets in the spine can be very painful.
First trip I want to make is to a hotel on the beach where I can sit on the balcony and watch the waves roll ashore. Love the sights and sounds of the ocean. We have been web surfing places to stay along the gulf coast.
If I get to make trips, I will share photos. I take a camera with me when traveling and am known to take a lot of photographs.
Hope 2020 is treating you all well. And again, thanks for sharing my ride. I appreciate each of you.
0 -
DodgersGirl, thank you for the update. We are all rooting for you and I hope when you are low you can feel us lifting you up.
And what a good idea to plan a beach vacation! We have gone to Carolla NC several times and loved it. We are currently researching Topsail Island which also looks heavenly. I'm sure Georgia and Florida have some lovely spots too.
0 -
DodgersGirl, thank you for updating. I'm sorry to hear of the pain. I hope it gets controlled quickly.
Fwiw, nobody tests ALP or anything else here. MO told me it's because there's no documented advantage to finding weeks or months early. Early stage you want to find early. Stage 4 she said there was no outcome difference so they don't monitor or go looking for it. If it happens, it happens and it'll become apparent at some point.
I've been battling a nagging low level cough for a month now. Saw doctor for something else when I'd already had it 2 weeks and she said yeah, nasty viral cough going around, don't worry. But my anxiety has been ramping up. I don't eat when I'm anxious so I've also been struggling to keep weight on. Sane people around me say it's not "unexplained weight loss. It's not eating enough due to anxiety due to cough" and that is logical but anxiety trumps logic a lot of the time. So I get more anxious and eat less (and keep coughing. Someone just told me they heard it's a 3-5 weeks virus so I guess I'm still in the range)
I think I finally need to see a counsellor again because I'm not snapping out of this loop.0 -
moth— interesting about no follow up blood work in your country. It seems to be standard here. After finishing the initial treatments, one continues to see MO every 3-4 months for a while, then every 6 months for a bit, then once a year. Each visit consists of an exam of the cancer site and blood work. Mammograms annually. No cancer marker tests just basic blood tests same as during chemo. MO looked for trends not just a one time increase. Rising ALP can signal bone or liver mets. Mine was slowly increasing since April. Now that I have been dx Stage 4, they took the largest jump yet in last blood test. You are correct that the outcome is the same regardless of how soon you are dx’d with metastatic cancer but you may be able to extend your time left by slowing progression. I sincerely hope that your cough is just a virus. Please keep us posted
0 -
Georgia1– yes, I feel you guys and your support. It is very comforting. Stage 4 can feel a bit overwhelming at times.
I love the grand stand along the Carolina coast. The ocean is so warm and the beaches are flat. I grew up in So California where we went to the beach all the time. Water in the Pacific Ocean is much colder than the Gulf or Atlantic Ocean is.
Topsail looks pretty. I like to watch the HGTV show on beach front property at a bargain price. They have filmed at Topsail a few times.
0 -
next MRI is scheduled for tomorrow. Please keep good thoughts for the test itself. Nothing to eat or drink after midnight means no pain meds before having to be on the hard table for 45 mins. It’s going to be painful.
Also just found out thoracic rads will start Friday and run for 10 days.
Brain MRI results are in my portal. If I am reading the results right, they didn’t see any brain mets which is a huge blessing.
Lumbar MRI also back. No surprises there, lumbar looks like thoracic spine with lots of bone mets. Sure explains my back pain.
Going to be busy the next 2 weeks. If rads go well, those buggers in my thoracic spine will be goners!!
0 -
Glad to hear that things looked okay on the Brain MRI. Did you specifically ask about the pain meds before the MRI, and they said no? I have no idea about when/how they relax those policies. Before surgeries, they also give those instructions but then they make exceptions for certain medicines. If they don't relax the policy then, certainly, I am hoping that they can find a way to make you more comfortable on the table. Sorry for your suffering...It's just awful.
0 -
Scarfgal— I plan on wearing a SalonPas lidocaine patch tomorrow. They do help calm the nerves down. I will take pain meds with me for the very reason you mentioned. I was told nothing by mouth after midnight for the PET scan but the technician said I could take a pill if I had one (which I didn’t have then).
Something about having a plan kind of in place just makes me feel more upbeat. Time to slay some cancer butts.
0 -
DodgersGirl - Are you feeling the collective exhale for the brain mets news? That is indeed huge! Tomorrow will be in the rearview mirror soon, and then on to slay those cancer butts!
0 -
Scottie719– thanks for the words that brought a smile to my face!!
0 -
dodger girl- that is a blessing about no brain mets. I wish the pain would be better for you. 2 weeks will go by quickly. Having a plan always makes me feel better too. My husband and I just got back a few days ago from rv camping at the beach. Love HGTV beach bargains too.
0 -
Thinking of you this morning, DodgersGirl...hoping that things go well today.
0 -
I haven't been on in a bit. Sorry for all your trouble DodgersGirl. Happy news about the brain met results. Hoping today goes well and radiation goes well and resolves your pain. Praying for the best results possible with today's MRI Hopefully they have music and headphones for you to use and think of all of us supporting you as you are going though this testing
0 -
MRI pelvic area is in the books! This test was feet first like the lumbar MRI. Unlike the lumbar test, this MRI comes with some kind of special blanket that they place over your tummy region. Not sure what it’s for.
Glad to be home so I could have food and water ( and a pain med).
Tomorrow is just a follow up visit with dermatologist to check on the healing of the skin cancer on my forearm.
The rest of today is feet up in the recliner and watch tv/na
0 -
So glad that this test is behind you! Rest well tonight!
0 -
Great to envision you in a comfy recliner DodgersGirl -- watching Beachfront Bargains!
0 -
DodgersGirl - sending good thoughts and warm hugs your way.
0
