Fourth Week of Treatment - 9/6/24

Just giving another update this week. The weather here in Minnesota has been really nice, so we have been taking advantage of it.  Over the weekend we played pickleball with my friends, ventured out to another farmers market for vegetables for my juicer (big juicer these days) and sat by the lake.  I also bought a bucket hat for the first time, and I guess you can say we are the bucket hat family now.

I had my 4th week of treatment on Tuesday and met back with my oncologist.  My dad took me to my appointment before he left town later that evening.  They first started with labs again and thankfully all my lab work came back normal, even the white blood cell count (I assume that extra day had helped)! Then we met with Dr. Lassi to check in, ask questions and go over any updates to my treatment plan.  The meeting with Dr. Lassi went extremely well!  She did a breast exam this time around to determine any changes to the large lump on my breast.  About a month ago the lump was about 9cm in size.  After her evaluation now, she said the lump is about 2-3cm in size!  This was such good news that the large tumor on my breast is shrinking!  I don’t notice much day to day, so helpful to have her opinion.  I have started measuring the lump myself moving forward to determine progress as I get more treatments.    But a big win for sure!! She also did a blood test to measure my liver enzymes this time around since a month ago my liver wasn’t functioning well.  The blood markers last month for AST was 216 and ALT was 269 (normal levels are below 50), but this time around the numbers dropped to 54 and 83 respectively!  This is great news that the treatment is working and potentially the tumors are shrinking in my liver!  These results were the first markers to determine progress of my treatment and I felt such relief.  Big wins overall!

Dr. Lassi said I would receive a PET Scan in Oct sometime, which will show progression of the tumors themselves on my bones and liver.  She doesn’t want to do the PET Scan too soon, so we are waiting until I have more treatments under my belt.  That and PET Scans emit radiation, so she wants to limit my exposure overall.  I received news that my last day of treatment will be on 12/9 as of now, which is about 6 rounds of the THP (Taxol, Herceptin and Perjeta).  After those 18 weeks, I will do another PET Scan and a Brain MRI again (PET Scan doesn’t cover brain), to see results.  The chemo treatment is a little longer than I expected, but I trust my doctor and believe I am on the right plan for the right length.  She said her goal is to take me off chemo at some point (which is the Taxol treatment every week I am receiving).  I will still need to continue with Herceptin and Perjeta (immunotherapy) every 3 weeks as the first line of treatment for at least a year or until it stops working – although I am a big believer that it will always work.   Of course, things can change over time with new treatments, etc. so I am very hopeful!

Also in the appointment we covered the results of the genetic markers from the liver biopsy.  I believe we are still waiting on the full genetic testing results to come back, but initial results showed one gene called NOTCH1 that I have, which isn’t one of the higher risk genes.  Apparently 30% of breast cancer patients have NOTCH1.  She said there were no current targeted treatments right now for this gene, but maybe 2-3 years down the line there will be something.  Again, I am not sure that having this gene makes this genetic or not and will know more after I meet back with the genetic counselor. 

In other good news, I joined a couple Facebook groups for those with MBC and HER2+.  For the last few weeks, I have been trying to find others like me, especially those around my age.  Finding these groups has been helpful for me to read other’s stories and understand how others are handling the treatments over time.  I want to hear the stories of other women on this journey, many years into the same type of treatment and that was exactly what I found.  While it pains me to hear of others in the same situation, I feel I received more hope this last week, just adding the fighter fuel I already have.  I was reading stories of women with HER2+ that are still around 5, 10, even 15 years later, with first line of treatment continuing to work well.  That is my goal.  I recently have been saying to myself what my next short term goal is and that is to make it to 40 years old.  I believe I can do it.  Thankfully I also received a second opinion from my good friend’s cousin, who is an oncologist at the Mayo Clinic in Rochester and she confirmed I am on the best treatments and we have come a long way in treating HER2+ cases.  She mentioned the statistics are out of date that you read on Google, which is what I was thinking as well and hearing these stories in addition just helped ease some of the fear that I have.  I also know there is tremendous research out there for breast cancer and new treatments coming down the pipeline.  I hope one day we can all be cured of this terrible disease!

For side effects this week, I haven’t noticed anything too drastic, although I haven’t felt fully like myself.  I notice I am a little more irritable (sorry mom and dad) and my mood changes quite a bit.  The side effect I find the worst is actually the brain fog though.  It is hard to explain, but my mind just feels heavy, and having full conversations I have found to be difficult.  Hopefully all that is just temporary and can get back to being me again.  On a positive note though, I have been able to workout, be active and do the things I enjoy!  I am incredibly grateful for all that I do have and will always hold onto that. 

This week I decided to forgo the $6,000 wig as I’ve been pondering and researching other options for wigs.  I plan to still buy a nice wig, maybe in the $500 to $2,000 range, more in line with what feels comfortable.  In the meantime, I have been buying all kinds of wigs off Amazon! I know they are not quite the same as real human hair, but I am having fun with it and crazy wig lady here I come!  I’ve ventured out to many places with my shaved head, with hats, scarves and actually feeling good about it. 

So it’s been about one month since all this started.  I have to say this has been the longest, most difficult month of my life.  This will continue to be the most difficult journey I will be on, running that marathon until the very end, but I will never give up.  To all my loved ones, family and friends, you keep me going, and I am forever grateful. 

This week was a good week, celebrating the small wins!

Love, Stacy