Long overdue Keytruda dose 21 update

Once upon a September and October, I began having a few strange symptoms with my Keytruda doses including weight gain that didn’t match my calorie intake, loss of pubic hair, some hot flashes. I mentioned them after discussing them with a nurse practitioner here. I had my estrogen levels tested and menopause was ruled out. Yay!

At my November appointment, my oncologist had taken a look at my symptoms and labs and diagnosed me with metabolic disorder. I certainly have a family history of these symptoms, although I don’t know if anyone in my family has actually discussed the overarching diagnosis of metabolic disorder with a doctor in the past.

My oncologist believes these symptoms are probably something that eventually would have been diagnosed with age, but the clinical trial medications or perhaps just the stress of this cancer journey have brought on the symptoms on a good 20 years early. Thankfully they are treatable and may not need medication but sweat therapy (aka exercise!)

It was after I finished with the doctor that my triglyceride levels came back from the lab and were high enough to rate a grade 3 adverse affect which meant I couldn’t get treatment that day. I came back the next day for fasting blood work which reduced my levels from 400 to 300, but not low enough to get me off the hook for a medication. I began meds and had beautiful blood work and dose 21 two weeks late on November 21st. It went without a hitch, thank God! Now I wait to see an endocrinologist to treat medication induced metabolic syndrome.

Historic day in mela-land! Anti-pd1 FDA approved!

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Yesterday, I was speaking with a counselor who is working with our family. As I explained some of our back story to her, I told her that when I was diagnosed with melanoma in 2009, my kids were 3 and 5 years old. I was 29. When I progressed to stage 4 a year later, my goal and focus was being here to get Abby through kindergarten. When I reached that goal my focus became to see the kids finish elementary school. After some big bumps in the road (brain tumors are BIG bumps) I began the clinical trial I am currently in. One day about a year ago after repeated good scans, I remember looking at Daniel and saying, “I’m going to see them graduate high school!”  Today my hope is to see them married and rock my grandbabies.

Today, the FDA approved the drug that is saving my life. I am so excited and thankful for this medication and that is will now be available for my melanoma friends. The trade name announced today is Keytruda. The medication name is Pembrolizumab.

There are more anti-pd1 drugs being developed for multiple cancers which are literally changing cancer treatment and outcomes. What an amazing day to sit and take a deep breath and know that my friends now have access to this drug. History was made today.

It’s bittersweet as I remember MANY friends whom I have loved and lost along this road. From my diagnosis in 2009 to today, 5 new drugs have been approved for stage 4 melanoma. In 2009, the offerings and success rates were dismal. But, I also feel such hope for the future. For my friends currently struggling, for my friends who will be diagnosed in the future, and especially for my children. Today brings hope and joy!

Thank you God for the doctors, researchers, trial patients, nurses and financial donors who allowed this to happen. We have not yet won the war against cancer, but today was a big step as a new arsenal was made available to those on the frontlines.

For more information about Keytruda, see Merck’s Press Release.

Stable, shrinking, and storms! Anti-pd1 dose 19

This post was written on Aug 14th during my infusion. I didn’t get it polished to post at the time. That night was Parent Information Night at school. Joey ended up in the PICU the next day! Add recovery from that, some time the site was down and life in general and Anti-pd1 dose 20 is only 3 days away! I am on every 12 week scans now, which is a welcome break, so this post includes the results of those scans.

Today was my appointment for scan results and my next dose of anti-pd1. It was a long morning of waiting. I was quite nervous about my scans this go round. Lots of my friends are encountering major potholes and detours on their melanoma journeys and it caused me some fear that my lately smooth road might get bumpy. I am thankful for my success on this trial but heartbroken for those who I love who are struggling. Cancer is a horrid disease. Thankfully my oncologist told me I was his only patient who received good news morning. That certainly put the wait time into perspective.

So, things are good in Marthaville! My tumors continue shrinking and remain stable. So I continue pressing on! We had a fantastic storm while I was at the cancer center including some loud thunder claps and a good power brown out.

Mk-3475 Antipd1 Dose 19

Stable! Shrinking! Storming!

Post MK-3475 (Keytruda) flush

My post infusion 30cc flush. (Other trial folks and I have noticed that this is delivered differently depending on our center. This syringe is added to my medication bag to make sure I get every drop!

3 days and a ton of bricks post anti-pd1 therapy

I felt so great after my infusion of anti-pd1 therapy on Thursday! Came home and enjoyed the family and got some chores done. On Friday I stayed busy and had a girls night out with some of my besties. This morning, three days post infusion, I felt I’d been hit with a ton of bricks. I saw the signs coming last night, drinking tons of water but it wasn’t absorbing. Then at one point while out with friends, I felt fatigue and a bit of light headedness wash over me. I also didn’t finish my gelato from Frost- a sure sign of impending doom! Once in bed, I realized my leg that swells with lymphedema was very swollen.

So, I shouldn’t have been surprised when I woke up swollen, sore and exhausted! I slept most of the morning and more this afternoon. I’m so glad Daniel is home to carry the load. He takes such good care of us. The family is out on a walk and I am still resting. This is the new normal and I wonder if it will ever really feel normal. I am so thankful that most days now are good days so the bad ones stand out!

Anti-pd1 Cycle 18

Anti-pd1, melanoma, clinical trial
Anti-pd1 Cycle 18

It’s been a month and today I’m back for anti-pd1 cycle 18, week 64! No stripping today, sorry folks.

I’m currently shivering under my blankets in infusion room. Brr! The liter of saline makes me chilly! Of course, there is a “popsicle patient” across from me (TH-302 trial) with ice packs in his armpits and groin. He’s also sucking on ice chips. I’m going to keep my mouth shut about being cold! It’s all about perspective!

Pager for cancer center appointments typos

“Welcome to$uhe University of Arizona Sancer Center N Campus”

I had to laugh at my pager this morning. I doubt this is the message the cancer center wants to send about their competency! Good thing I am an experienced patient and know this is not a reflection of the care!

I had a brain MRI yesterday and it looked good! My trial nurse went out of her way to call me with results yesterday so I didn’t have to face the anxiety waiting for my appointment today. I’m thankful for her understanding heart.

Port-a-cath

Assimilated. Resistance was futile.

Today’s labs included another to-do about how tiny my dual port-a-cath access is and how deep the bottom section is to access… it needs a longer needle… blah blah blah. It’s interesting how much nurses vary in their assessment of my port. I am learning which hills to die on with port access, but when to let the nurse’s instincts and concerns lead the way. A longer needle has never really been necessary, but if they feel more comfortable with it, I’m not going to argue. It does seem to cause trouble if I lie back and they try to access the port. I believe this is because of tissue moving when I’m reclined which interferes with the port access. So, I request to be upright when it’s accessed!

It did eventually get accessed, the seven tubes of blood drawn and after giving a urine sample-which prompted a tweet to the cancer center about needing a hook on the bathroom door, I was on my way! (Imagine me, laptop bag, coffee and urine  sample cup in a room with no shelves nor hooks. Wait. Don’t.)

I saw my nurse practitioner for a straightforward visit. Discussed allergy meds and she said my nose is a little inflamed with the new dog. Doh! She recommended an over the counter nose spray. Allergy meds will not interrupt my immune system. She explained the histamines they treat are not part of the cellular immune process which fights cancer. Oh college Martha, you should have taken cellular biology! 

I’m now finishing up my liter of fluid and about to get my lovely anti-pd1 (MK-3475) Then I’ll be out of here! Dose 18 done! Hi-yah! Take that melanoma!

Cancer center waiting area

Ready to have my port accessed, labs drawn, doctor check in, and infusion! Watch out cancer, here I come!

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My infusion chair had a lovely mountain view

 

Anti-pd1 cycle 17

 

Melanoma infusion

Technically I’m getting fluids here… but close enough!

Last Thursday (June 19th) I had dose 17, week 60 of the Merck MK-3475 trial drug. (AKA Pembrolizumab, formerly known as Lambrolizumab, anti-pd1, melanoma immuno-therapy, my miracle drug)

I had a CT scan and saw Dr. Cranmer last week for scan results, which looked fabulous. Everything continues to shrink! We spent most of the visit geeking out and comparing notes about ASCO (American Society of Clinical Oncology) Annual Conference and the melanoma conference I’d attended in May. Nice to just chat about shared frustrations in the need for patients to see melanoma specialists and not being given treatments in an order that seems logical (at least to us….)

This appointment, since we knew things were looking good, Daniel stayed home with the kids while I went to my appointment alone. Labs look great! My LDH has dropped again! I am well within the normal zone for this tumor marker in blood.

LDH Levels on Anti-PD1

LDH Levels while on Anti-pd1 Trial. You can see when my immune system activated and a spike while on drug holiday.

I saw my nurse practitioner and the trial nurse coordinator. This was a quick visit since everything had been reviewed last week.

I headed upstairs for my liter of fluids and infusion. It was a quiet day in the research room. I did freeze sitting under an AC vent with the cold IV drip so I got my first heated blanket wrap in a while. Feels a little odd when it’s 103 degrees outside!

I went home and slept all afternoon which is unusual for me. Usually when I have fluids with treatment, I am not as wiped out. Perhaps the heat just wiped me out. Getting into a 130 degree car is probably enough to suck most of that liter of fluid right back out of me! The weekend was tolerable, although the post infusion thirst is insane. I also am fighting my usual rash and a slight headache. My one new symptom this month is dry eye and some slight redness since the infusion. It’s always an adventure, but SO worth it for amazing results!

 

Side effect notes with anti-pd1

This is probably only interesting for me and others beginning an anti-pd1 trial. I had dose 16, trial week 56 on May 22. I am on a 30 week extended cycle (due to brain side effects) of either 2 or 10 mg/kg of anti-pd1. The trial is blinded so I am not sure of the dose. I requested a liter of saline along with my dose as it seems to help me avoid the immediate fatigue. Thursday they infused the liter over 90 minutes half before and half after the 30 minute Anti-pd1 infusion. 90 minutes of fluids seemed a little more effective than the previous 60 minutes when I try to get out earlier. I don’t seem to absorb the fluids as well with the shorter infusion. I avoided fatigue and other side effects until the weekend. Sunday (3 days post infusion) the fatigue hit like a truck. On Friday (8 days post infusion) I finally found relief (at least partial, I’ve stayed busy and needed naps.) Today (Sunday June 1, 10 days post infusion) my neck rash has begun. Other contributions to the fatigue may have been travel just before treatment, the first week of summer break for my kids and my first massage on Thursday (7 days post infusion) which caused my typically tight muscles to be quite sore!

Itchy rash on neck

Anti-pd1 Rash 10 days post infusion

Thursday Anti-pd1 Appointment Update!

Anti-pd1 Dose 16, Trial Week 56 (I wrote this on the way home from my appointment last week, but didn’t get it posted. I’m much too lazy to go back and change the tenses, so pretend you are reading this last week!)

Great appointment today at the cancer center. Started with requesting my favorite nurse to check my port placement. It had caused some issues at my last appointment, but it was confirmed as caused by an inexperienced nurse, not port issues! Phew!

My labs looked good. My LDH (a tumor marker in blood) has officially been in the normal range for two months now! It continues to steadily go down which feels incredibly victorious!

I saw my nurse practitioner and discussed upping my SSRI (Lexapro) as expected (the dose usually needs upping after 4-6 weeks.) This fits my normal pattern. I’ve been on SSRIs for post partum depression, again for interferon (my first melanoma treatment) side effects, after I was diagnosed stage 4 and now again. It probably now something I will stay on forever. I am very comfortable that I need this due to brain chemistry issues and not some moral or spiritual failing on my part. {Soapbox} I feel it is important to bring mental illness discussion into the light and out of a place of fear and condemnation. {/Soapbox}

I also was having some left flank pain which worried me because it felt so similar to flank pain I’d had with subq (under the skin) tumors on my right side. No worries though, it’s just a muscle spasm. I am scheduled for massage next week if I can’t get in before that.

Infusion went fine. Got to catch up with a friend and his caregiver I’d met in our local support group. Requested IV fluids since they seem to help with my fatigue. I just can’t seem to drink enough ever to keep myself hydrated.

My only other anti-pd1 side effects are a slight rash around my neck and on the back of my hands.

Not a bad morning at the cancer center! Now to go celebrate my new 3rd and 4th graders since today was their last day of school! Yippee!!!