Hypercalcemia and Leptomeningeal Mets…..An Update

Hypercalcemia is a condition where the body cannot regulate excess calcium levels in the blood. The symptoms include thirst, frequent urination, confusion and other cognition problems, weakness and fatigue, reduced appetite, vomiting and nausea, irregular heartbeat, cardiac arrest, and coma.  The breaking down of bone mets can result in excess blood calcium and a diagnosis of hypercalcemia. This is what happened to me.   Paclitaxil worked well on my brain.  It also worked too well on my bone mets.   My blood work was always checked before chemo.  Once the bone mets started breaking down my calcium levels rose quickly. I felt nothing.  I didn’t even know I had vomited or urinated.  I was just out of my mind.  Watch those calcium levels!

My husband found me in the bed laying in vomit and urine.  I was purple, limp and completely unaware of what was going on.  He called my mama and 911.  I was taken to the hospital in an ambulance and wouldn’t have made it there alive any other way.  I had no cognitive thinking, I honestly thought I had been kidnapped.  When I recovered and looked at my phone. I had sent text messages to friends saying I was kidnapped and to get my son to help me.  I cussed out and fired doctors.  I was mean!  If you know me, you know I’m not that way.  My sister from North Dakota, my cousin, Teressa, and my grandbabies came to visit me in the hospital.  I didn’t even remember that.  I saw their pictures and still don’t remember them being at the hospital.  I was as close to death as I’ve ever been.  Things can change so quickly!  Speaking of changes, this is what’s going on now…..

I have leptomeningeal metastases.  It occurs when breast cancer spreads to the meninges, which are layers of tissue that cover the brain and the spinal cord. Intrathecal chemotherapy is an option.  It’s  delivered directly into the cerebrospinal fluid through an Ommaya reservoir, which is like a port inserted in the head, under the scalp. Sounds a little scary!

There are a lot of new accessories in my house and they are not pretty ones!

I now have a bedside toilet, a raised seat on my bathroom toilet, a rolliator (my fav!) a wheelchair and a bath bench is now in my bathtub.  My legs and my arms are so weak!  It’s hard to walk and hard to pull myself up.  I almost fell into my bathtub when I tried to get off the bathroom toilet alone.  My mama caught me.  The raised toilet seat is a blessing.  My physical therapist found it and brought it to me as a early birthday gift.  That brings me to where I am today.  They talked about home health care and hospice.  I chose to have home health care and physical therapy.  They both come by twice a week.  The nurse checks my vitals, they are looking better.  My physical therapist has me doing exercises.  I think it’s making my legs stronger.  I will see my oncologist in 6 weeks and we will see what’s next.

I’ve lived with metastatic breast cancer for almost 6 years.  I was initially told I would live close to a year. God has been good to me.  I have been blessed with grandbabies and a million new memories.  My prayer has always been to see my son graduate from high school.  He has 2 more years.  This is still my prayer.

Don’t take tomorrow for granted.  Smile, make someone smile, spread some love and spend time with your loved ones.  Those are the things that matter in the end.  You never know what life has waiting for you!  Make the best of it and get out and make some memories!💕💕

I love you all so very much!  Thank you for all your love and prayers!

October is breast cancer awareness month.  Know when you make a donation it’s actually making a difference.  METAvivor uses every dollar raised to fund metastatic breast cancer research.  Know where your money is going and who’s pockets it’s filling.  Give to METAvivor.  Support Metastatic Breast Cancer Research.

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http://www.metavivor.org/take-action/donate/

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Beyond Time for An Update.

Beyond Time for An Update.

I have been home a few days now. I’ve spent the last 10 days or so in the hospital. Unknowingly, In the hospital. I honestly thought I had been kidnapped. I know it sounds crazy but it’s not. My Mom and my husband were trying to get me up from my bed at my house. I would vomit every time they tried. I couldn’t speak to them. I couldn’t walk. I was completely unaware. They called an ambulance, if they hadn’t, I wouldn’t be here today. It seems to be the chemo therapy I was on caused Cancer-Related-Hypercalcemia. My calcium levels were so high, I was literally out of my mind. I’ll follow up on this later. Right now I’m just trying to give you an idea of what’s going on.

Though my brain looks better, I’m actually doing worse than I’ve ever been. I now have leptomeningeal metastases which have spread to my meninges and spinal fluid. It can’t get much worse for me. I have two more days of radiation. I don’t know what’s after that. So far I’ve heard there is nothing else to do.

Right now my plan is to rest and get through my last two radiation appointment’s. My doctor has said I can have no visitors until she sees me next week. The least little germ could kill me right now.

I’d love to see you guys, I just can’t. I saw my kiddos the other day, so I have a few pictures. For now that’s really all I know. I have to give this to God right now. I’m serious when I say I can’t even walk alone. My mama and my Javiee have been doing everything for me. Stop and think about that. It’s so hard, but I’m so blessed to have them here right now. I will update you all as soon as I know more. I love you all! Thank you for the love and prayers. Get out and make some memories!💕💕

Dropping Tumor Markers!

After one triple dose of Paclitaxel my tumor markers have dropped from 1615.9 to 999!  It wasn’t easy, but so worth seeing such a big drop after one treatment!

I was down for a while and was extremely weak.  I still managed to have a day out with my grandbabies Sunday.  My legs were still weak.  I sat down with Evie and T.J. had to help get me up.  First to my knees, then to my feet.  Exhausting but so worth it!  Here are pictures….

Then they spent the night with me on Monday!  I miss them so much after chemo!  Jax always has to have a pizza party in our bed and Evie wasn’t feeling well that night.  I was just so happy to spend time with them!  More pictures…

Now I’m off with my Javiee to see Lynyrd Skynyrd this weekend in Atlanta!!  I come home to port surgery on Tuesday and chemo on Wednesday!  At least I’ll have a good weekend before!

I love you guys!  Get out and make some memories!💕💕

Paclitaxel (Taxol). Back where I started.

I’m back in the chemo chair. I’m revisiting Taxol, the first chemo regimen I ever did. It worked the first time so I’m hoping since it’s been 5 years it will work again. I’m doing three rounds at once every three weeks instead of one round every week for three weeks. I was told the side effects would be harder but liked the idea of only going once every three weeks. I’ve had and I’ve recovered from round one. I actually like doing three rounds at once. I was exhausted for eight days. I even fell when I stood up to get out of bed because my legs didn’t hold me. It left me with a nasty rash that cleared in a few days. My port has been removed because it had cracked. We went into a vein in my arm which was a mistake. It burnt my arm and my fingers. I’m having a new port surgery before my next round. I had a little nausea and the skin is peeling off every one of my fingers, top and bottom. It’s not painful, just ugly. I can deal with these side effects. I’m just praying it works! Here are some pictures of what round one left me with……

I should be having my next treatment this Tuesday. I’m putting it off for a week because my aunt and uncle gifted me with Lynyrd Skynyrd tickets for next weekend! I grew up with that band! Not missing that!

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Thank you Aunt Cindy and Uncle John! You couldn’t have ever given me a better gift!❤️

Last week my sweet mama drove me almost six hours to see Kris. We talked and had an 8 hour food fest. She’s doing so good! It made my heart so happy to see her! We had pictures made. They will be here soon and I’ll share them then! I love you mama! Thanks for always being there!

Here’s the cherry on top! T.J. started 10th grade! He was in 4th grade when I was diagnosed. I cried like a baby once he left for school. I’m so blessed!

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I love you all! Thank you for the love and prayers! Thank you for sharing my life with me!❤️. Now get out and make some memories!💕💕💕

Back In The Chemo Chair….An Update

Xeloda has not been good to me.  My tumor markers are higher than they have ever been.  They are sitting at 1613.9.  It’s usually accurate with what’s going on in my body.  70 percent of my bones have been invaded by cancer.  We still are not sure if it’s new cancer in my brain or brain necrosis.  I will have new scans in another month to reevaluate exactly what it is.  If it’s necrosis then we don’t want to go cutting on my brain.  Wait and see.   For now I’m taking Paclitaxel.  I’m doing it once every three weeks.  It can also be given once a week for every three weeks to lessen the side effects.  My oncologist thinks once every three weeks is a better punch.  That’s what I’m doing.  It’s day two and I’m exhausted.  I feel so weak.  It’s actually hard to get out of bed right now.  I’m just dealing with it and resting.  It will be worth the down time if it works.  Some pictures from my first day back in the chemo chair. I’ll go in one day soon for a port.  My arm can’t handle this kind of treatment.  I did it, but my arm was on fire afterward.

I love you Guys! 💕  Plan something fun for the weekend!  Make some memories and    send me a picture! 💕💕  I’ll do a friends adventure post.  We may have cancer, but we’re still loving life!

Sharing My Family Vacation!!!!!!!! …………………………………………………………………………………… We just spent a week in North Myrtle Beach as a family. It was the best trip ever! 
 I was worried if we would even make it there. My arm was in severe pain and I was doing radiation treatments until the morning we left. I was in radiation at 8 am and we were on the road soon after. Thank you mama for driving! My oncologist prescribed me steroids and morphine to keep the pain flare ups away, it worked! Thank you Dr. Smathers! You know I adore you! The afternoon before we left I was going to let T.J. drive me around town ( He got his learners permit!!). My car wouldn’t start. I was devastated because it was after hours and no shop was open. A few years ago we went on a Little Pink Houses of Hope beach trip. I ended up in the hospital with brain mets. We planned a trip to the beach at Bear Island the next year and I ended up in the hospital with treatment induced diabetes. Was it going to be my car this time? I asked God “Why can my family not have a beach trip without something happening.” My Javiee happened to be at Auto Zone when I called to tell him the car wouldn’t start. He met a mechanic that said he would come to my house and look at it. He came out and put a new starter on my car and didn’t even try to overcharge us! Change of perspective……”Thank you God for letting this happen before we left on our trip and for putting that mechanic there”. I knew this trip was blessed! Here are some pictures……
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That’s my Javiee and I with our grand babies. Then my son, Kori, his wife, Emily, and our grand babies. Then my sweet mom and I. The next one is my oldest son, his wife, me, my mom and my youngest son.

 

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My grandbabies at the beach. My mom and I with T.J. at one of his favorite places. That’s me. Then my daughter in law, Emily, my mom and me again.

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That’s my mom and I, My Javiee and I, My youngest, T.J and I, My oldest, Kori, and I. Then Kori and I with my grandbabies.

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My grandbabies! I love being a glamma! That’s Jax and I at the pool. Then my favorite! This little lady has sas!

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My mom and granddaughter. My daughter in law, Emily. My oldest and youngest boys. My grandbabies at the beach. My mom and I in a shark head. My guys going on a helicopter ride

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That’s my Javiee and I on date night in a helicopter. I love this man!

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For our last laugh we stopped at Dicks. The food was horrible but it was so much fun to laugh at each other.

I love you all💕 Thank you for your love and support!   Summers almost over!  Get out and make some memories! 💕💕

New Scans

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There are two scans there, just click the links.

New scans and another wait and see.  Friday there will be a meeting on my body scans.  Do we add to Xeloda or make a total change?  That is the question.  Tomorrow I will see my radiology oncologist and will either start or make a plan to start radiation on my right arm/shoulder.  I have been in so much pain the past few days.  Even my pain meds don’t help.  I got a stronger pain medication today.  I don’t like it, it makes me nauseous, but it takes the pain away.  That’s where I’m at until tomorrow.  I’ll let you all know when I have a definite plan.

 

Sending love to you all!  Get out and make some memories!💕

Brain MRI Results

TAMMY CARMONA

FINDINGS

BRAIN AND EXTRA-AXIAL SPACES: In the interval, there is significant enlargement in the multifocal areas of enhancement in the medial right temporal lobe since the previous exam of 04/23/2018. There is a dramatic increase when compared back to 01/22/2018. The inferior component of enhancement is without significant change measuring 1.3 x 1.8 cm (transverse by AP), as seen previously. However the superior component measures 1.6 x 2 cm and previously this measured 0.9 x 1.5 cm. In addition there is a more anterior component of enhancement that measures 1.3 x 1.1 cm that previously measured 0.8 x 0.4 cm. Thus, there is significant increasing enhancement in the medial temporal lobe. Surrounding edema in the right temporal lobe extends back little more posteriorly than previously. Perfusion images however do not show significant increased perfusion. Perfusion images suggest that these changes are related to radiation necrosis. However given the significant progression, I am concerned this is progressive neoplasm at this site..

The 2 mm focus of enhancement laterally in the right cerebellum on image 23 of series 10 is unchanged. The small focus of hemorrhage superiorly in the left superior cerebellum is unchanged.

No new areas of enhancement are visualized.

VENTRICLES: Normal in size and configuration.

SELLA/PARASELLAR REGIONS: Partially empty sella is again visualized.

VESSELS: Normal flow related enhancement in the major vessels of the circle of Willis and the major dural venous sinuses.

CALVARIUM AND SKULL BASE: No calvarial abnormalities are identified. PARANASAL SINUSES/MASTOID AIR CELLS: The paranasal sinuses, middle ear cavities and mastoid air cells are well-aerated.

ORBITS: Within normal limits

CRANIOCERVICAL JUNCTION: Within normal limits

OTHER FINDINGS: No other significant findings are seen.

IMPRESSION:

1. Interval significant increase in enhancing multifocal areas in the medial right temporal lobe since the previous exams of 4/23/2018 and 1/22/2018. Although this could still be radiation necrosis, recurrent neoplasm is an increasing concern.. MR cannot definitely differentiate these.

2. Unchanged tiny punctate focus of enhancement in the right cerebellum and small focus of hemorrhage in the left cerebellum.

3. No new areas of abnormality.

I love my radiology oncologist. She’s always honest with me. She’s says this is not good. We are not sure if it’s cancer or necrosis from radiation. There will be a meeting on my case on Monday. Then we will have a new plan. Right now the plan is to add another drug to my Xeloda and rescan in 2 months. If the progression is still as fast as it has been the past two months then brain surgery is my option. This plan may change after the board meeting. They will also consider some clinical trials. It seems to be another wait and see.

For now, I’m going to enjoy summer! I’m still going to the beach for a week and then the 🍒 on top is Lynard Skynard in September!😂. This has already been an eventful summer! I tell myself daily that I am blessed to be here and still be making memories! I have watched as T.J. got his first job, his first checking/ savings account, and finished drivers ed! He will be driving me around next week! I told him one day he will wish he didn’t have to work. I said don’t you want to hang by the pool, kayak and do things like that this summer? He said “Mom, I’m building my resumé”. 😂. How do you say no to that? I’ve also had so much quality time with my precious grand babies! You know I’m including pictures!

Thank you all for your love and support. You all bring sunshine to my life! I may make cancer look easy, but it’s not. When you see my adventures on Instagram or Facebook, know that I’m in bed on pain meds the next day. It’s so worth the memories I’m making! Life is so good! Get out and enjoy it and make some memories!!!!!Sending love to each and everyone of you!💕💕💕💕

Rising Tumor Markers

I have lived with metastatic breast cancer for five years. Throughout this time my CA 27.2 marker has been an accurate indication of what’s going on inside my body. It’s steadily been on the rise. This month it jumped another 170 units. My hope is that cancer is dying and not growing while I’m on Xeloda. I have a new brain MRI and a chest and abdomen CT scheduled in two weeks. If the tumor in my brain is bigger my only option seems to be surgery. I’ve decided to have the surgery if necessary. But first, I’m going to the beach for a week and I’m going to see Lynyrd Skynyrd the first weekend in September! I’m going to enjoy summer, make some memories and not stress the outcome of my scans. If I have to deal with it I’ll do it in mid September.

Here are my recent tumor markers. They seem to be rising since I started Xeloda.

CA 27.2

1311.8 units/mL
Date:
Jun 11, 2018

1141.6 units/mL
Date:
May 11, 2018

1084.6 units/mL
Date:
Mar 16, 201

1037.9 units/mL
Date:
Feb 16, 2018

1057.4 units/mL
Date:
Jan 26, 2018

968.0 units/mL
Date:
Jan 04, 2018 n

263.3 units/mL
Date:
Nov 24, 2017

268.7 units/mL
Date:
Oct 26, 2017

216.2 units/mL
Date:
Aug 11, 2017

232.8 units/mL
Date:
Jul 27, 2017

199.3 units/mL
Date:
Jun 28, 2017

160.1 units/mL
Date:
Jun 01, 2017

Despite all this cancer chaos, I’m still alive, so I’m still smiling. My Javiee and I celebrated another anniversary on June 5th. Here’s a picture….We went to The Conundrum escape room in Asheville. If you haven’t been to an escape room, you should definitely go! We didn’t escape but we had a blast! Here’s our picture…..My precious granddaughter, Evie, had her first birthday! You know a picture is coming!

Thank you all for your love and prayers! I’m sending love to each and everyone of you! It’s summer! Get out and make some memories!💕💕

Brain MRI Update

I was concerned about this MRI because it was to determine if I would be having brain surgery in May.  One 3mm lesion is gone.  Others have decreased in size.  The one that was most concerning has grown a little.  My board of doctors met and decided we should do scans again in two months to see if it changes.  The hope is that it’s brain necrosis and not a tumor.  I have an appointment with a neurosurgeon next week.  I think it’s good to be prepared for anything.  I feel better knowing I have a plan if something doesn’t go my way.

I’m happy with these results. I’m excited that summer is on the horizon! Time to make some memories!

I have to share a few memories from the past month!

My precious grandson turned 3!  I’m so blessed to be here to  get to know him!

He saw Spider-Man at the circus and asked him to come to his birthday party. 😍. Spider-Man came and was awesome ( Thanks Chris)!!!!

I kept Little Miss Evie for the first time.  This is a big deal, she’s a Mama’s girl!

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Jax and I usually paint rocks.  Last week we made our own teepee.  He loved it.

Next week Miss Evie will have her first birthday party.  Here’s to more memories, get out and make some!💕💕

All my love to you guys!  Thank you for the love and prayers! 💕