Final Countdown to Skin Graft

Today my neurosurgeon reviewed the August 15th brain MRI, and everything looks great! At least one part of my body got a clean bill of health. Of course, the lesion eliminated brain matter, and that’s gone for good so my left-side weakness persists without any change. However, I can get stronger and get an occupational therapist consult to see if there’s any hope for improvement with my left hand. Goal: gym membership after skin graft is sufficiently healed – middle of October?

I also had a wound appointment today. I successfully completed 70 hyperbaric oxygen therapy treatments, and they definitely helped. The wound specialist said I’m ready for a skin graft! She’d like to give the wound another week to continue growing granular tissue, so I think I’ll be scheduled for surgery in two weeks. Two years ago the operation took about an hour and a half, and I had a bolster dressing on for 5 days. I’m so anxious to have this wound from my March 10th surgery finally closed!

I’m encouraged by the newest drug, LN-144, to hit the FDA’s fast-track. However, it looks like a tough one to tolerate with just over half of the patients experiencing serious side effects. Even though they’re still recruiting, I don’t know if I’d be eligible since my tumor burden is low. I’ll definitely be discussing this with my oncologist in two weeks. He has another drug he’s considering as a plan B, so I have to get that name and check it out.

I’ve tightened up my diet a bit and want to visit a holistic doctor to build a better plan. While I know it’s extremely difficult to get into remission when you’re at Stage IV, I also know I’m not doing enough to get myself there. I must lose this steroid weight and get my diet and supplements figured out. I need a plan I can stick to for the long haul. So far I’m down 13 pounds!

Here’s to attainable goals, continued hope, and a lot of fight!

Brain Surgery – Done!

Never a dull moment here! The brain edema (swelling) continued around a lesion left from two rounds of gamma knife surgery back in June and September of 2015. I began noticing the side effects in my left-hand fingers beginning July 4th, 2016, and it continued until it had weakened my entire left side from shoulder to toes. Physical therapy and occupational therapy worked at keeping/gaining strength, learning adaptations, and, generally, keeping me from falling. A partial brace helped with foot-drop and ankle rolls but didn’t do enough to help my hyperextending knee. We had several consultations with my neurosurgeon to discuss options but, with the discovery of something new in my lungs on the October PET scan, I wanted to resolve that before moving forward. One problem at a time!

The suspicious lung lesion responded to a course of antibiotics (Yay!), but was replaced by bilateral PEs (pulmonary embolisms = blood clots = BOO!) in the November 6th CT scan. I had to start twice daily injections of Lovenox for a few weeks before they started me on Coumadin/Wayfarin/Jantoven. So the lungs were treated and we were ready for another neurosurgery consult.

I had another brain MRI on December 9th, 2016, which showed the lesion as slightly larger at 2 x 1.9cm with increased surrounding edema. It wasn’t going to go away by itself, and the steroids had very little effect on it (except I lost my senses of taste and smell, gained 30 lbs., and never slept). Now was the time! I felt great, had no new tumors, and was horribly frustrated by my continued left-side weakness. We met with the neurosurgeon on Thursday, December 15th, fairly certain about the course of action to take. If we were ready, he was really ready! I was scheduled for the next afternoon to have 3 fiducial markers (screws) placed in my skull just under the scalp in preparation for the surgery. With the screws in place, I had a CT scan which the doctor used along with my latest MRI to create the treatment plan. My 3 shaved spots were stitched and I was on my way home – easier and faster than gamma knife!

The surgery – laser interstitial thermal therapy – took place around 3:00pm Wednesday, December 21st. Afterwards, the surgeon showed Bill and Kelly cell phone pictures of the lesion being heated in the MRI machine and destroyed. Bill was able to see me in recovery after 7:00pm, I think. The screws were already gone with only two stitches each, and I had added just one more shaved spot with two stitches for the probe. I needed to stay overnight for observation, but had no problems. I was released early the next day to home. The doctors warned that the swelling would probably get worse before it got better (and there are NO promises on how much left-side function I might be able to regain). It did get worse – my left-hand preferred to be in a tight fist and my toes wanted to curl under. A week of steroids  seemed to keep the swelling in check. I can relax my hand now, though it’s still not much use, and I need to wear shoes for walking to protect my toes. The brace continues to help with foot-drop.

I was so very grateful to be home for Christmas – very tearful, but home! Having our family with us meant everything! We truly missed those whose travel plans couldn’t get us together, but we’ll try to make the rounds in January. My sister-in-law did the cooking, my brother-in-law helped install a longer handrail to get myself upstairs, my brother drove my parents out for a wonderful visit, my hubby lowered the bed to make it easier to get in, and neighbors made us a most delicious Christmas Eve dinner. Our children and grandchildren made the first week after surgery an extra special time full of love and laughter.

Keytruda infusions continue every three weeks. At the next one I’ll have my next PET scan and we’ll see where we are then. I’ll deliver my orders to restart PT and OT tomorrow (Tuesday), and plan to work hard to regain as much function as possible. The difference I’ve noted is that my left arm/hand/leg/foot feel heavy, which isn’t how I would have previously described them. In the meantime, I’m not allowed to drive for a few more weeks which makes me feel as though the last vestiges of my independence have been stripped. I’m normally a strong, independent person, and these last six months have tested me to the core, especially the last two weeks where I’ve become even more dependent. My husband is truly my life partner, through *everything*, and I know I haven’t been easy to keep still in one place, out of trouble. I’ve always reserved my patience for others, not for myself – I’m still learning (and I still hate to ask for help!).

So, if you see my hubby, give him a pat on the back for all he has endured/is enduring, and buy him a beer! You can take him golfing – I’ll just sit in a chair and promise to stay out of trouble (wink, wink!).

Future plans – discuss yoga with my doctors and therapy providers and find the right fit to get started.

New Challenge

Well, so much for the trifecta of adding the T-vec injection to my radiation and Keytruda treatments! I’m glad I gave it a go, but I only made it through two T-vec doses because I ended up with flu-like symptoms each time that took almost two weeks (each dose) to overcome. With each dose I woke up during the night with fever, aches and pains, and nausea. I wasn’t able to keep anything down for a few days, and then I had to regain my strength and appetite. As if once wasn’t enough, I did it again with the hope that it wouldn’t be as severe, especially if I pre-medicated. The other factor was that with my first dose of T-vec I also had a first dose of Xgeva to fight against potential bone loss from my radiated left hip tumor, and its first dose can cause severe aches and pains. Well, there was no Xgeva injection with my second dose of T-vec, since I get Xgeva every six weeks and T-vec every three, which we hoped would lessen the side effects. While the aches and pains seemed to be less severe, with the nausea it wasn’t enough to continue with injections. We switched to radiation to zap away the leg tumor since I’ve had good responses to radiation in the past. I had four treatments one week apart in July and the tumor has spent the rest of the summer melting away – it’s a beautiful thing!

The New Challenge began very subtly on July 4th. I sat down at my laptop to type and experienced weakness in my left hand – my fingers didn’t want to fully cooperate. I actually checked the mirror for any facial droopiness and did the tests to check for stroke. Luckily, no stroke symptoms, but I knew something had changed. Over the next few weeks I noticed a change in my balance and the weakness grew to encompass my entire left side. Brain MRIs confirmed edema on my brain’s right side around the site of last year’s (June and September 2015) gamma knife treatments for a brain tumor. The post-tumor site did not light up on my March PET/CT scan (“no FDG avid focus or suspicious lesion”), but had a change in my June PET/CT scan (“Hypodense lesion of the periventricular white matter superior to the right lateral ventricle is increased in size measuring 2.5 x 1.6 cm without FDG avidity, likely representing focal edema within the location of known metastatic lesion best seen on prior MRI dated 4/18/2016”), and the doctors don’t know whether it’s radiation necrosis (dead tissue from the 2015 gamma knife treatments) or tumor growth in the exact same spot. The “spot” has grown from 1.4 cm on July 11th to 1.7 cm on August 5th to 1.8 cm on September 2nd, so at least the growth is slower! (Note: 1 cm = .393701 inch) However, the perilesional edema has decreased, likely related to the steroid treatment I’ve been on since July 29th. I started with high doses of steroids (16 mg/day) and have been weaned down to 4 mg per day for the past few weeks. Today that dose has been reduced to 2 mg a day for a week and then down to 1 mg a day from there on out. I’m quite ready for this reduction and hope to potentially regain some of my tastes and smells!

Why now? It’s been a year since my gamma knife treatments. The doctors are puzzled too. It’s possible that the immunotherapy I’ve been on every three weeks since last June (infusion treatment #22 yesterday) has had some effect. No one knows. The other unknown is whether the “spot” is radiation necrosis or tumor growth with no way to know without a biopsy (unless it lights up on the October 5th PET/CT scan). Hopefully it’s radiation necrosis and the continued steroid treatment will continue to lessen the edema. Time will tell! (I wish I had more patience!!)

The plan moving forward: I’ve met with my neurosurgeon and discussed laser interstitial thermal therapy as a best possible treatment. Resection is another option but is more invasive – we still need to discuss this as a viable option since my oncologist seems to favor this. I favor less time in the hospital! A decision might be made after the PET/CT scan plus another brain MRI (October). My neurosurgeon, radiation oncologist, and oncologist have all been discussing my case and keeping up-to-date on test results. The ultimate decision will be between my neurosurgeon, Bill and me.

For now I’ve been busy with occupational therapy (OT) for my hand and arm movement, and physical therapy (PT) for balance, gaining strength, and walking. OT has helped to regain some finger movement and grip strength, and PT has improved my gait. I’m not sitting at home wringing my hands, but am enjoying each day for whatever gifts it brings and every day delivers if I allow myself to be open to it. I’m quite thankful!!

Treatment since May 13th (thank goodness I retired!):

• 6/01 – labs, doctor, infusion plus 2nd (and last!) T-vec injection
• 6/07 – dermatologist
• 6/22 – PET scan, labs, doctor, infusion
• 6/24 – radiation oncology appt.
• 6/30 – radiation simulation
• 7/07 – radiation planning
• 7/11 – brain MRI
• 7/11 – 1st radiation of right pretibia
• 7/13 – labs, doctor, infusion
• 7/18 – 2nd radiation of right pretibia
• 7/25 – 3rd radiation of right pretibia
• 8/01 – last radiation of right pretibia
• 8/03 – labs, doctor, infusion
• 8/18 – occupational therapy (OT) begins
• 8/23 – OT and neurosurgery appt.
• 8/24 – labs, doctor, infusion
• 8/25 – OT
• 8/26 – physical therapy (PT) begins
• 8/29 – OT
• 8/31 – PT
• 9/01 – OT
• 9/02 – brain MRI and radiation oncology appt.
• 9/07 – OT and PT
• 9/08 – PT
• 9/13 – OT
• 9/14 – labs, doctor, infusion

As always, my thoughts and prayers are with those fighting the fight and with those for whom the fight is over.

The Trifecta

The trifecta refers to my treatment over these past months: Keytruda infusions every 3 weeks, radiation treatments to my hip and right arm, and now T-vec.

I decided to write an update tonight because I just received the Med Center’s first out-of-trial T-vec injections in the tumor on my right leg. It’s a big deal! T-vec (IMLYGIC, talimogene laherparepvec) is a weakened form of the Herpes Simplex Virus Type 1 (commonly called the cold sore virus) that is injected directly into a melanoma tumor. I didn’t receive the 100% virus today, but a lower dose till they see how I react. If all goes well, I’ll receive the full dose in 3 weeks and then every 2 weeks afterwards. The first needle wasn’t too bad although the doctor had to move it around to fill the tumor with the drug. The second needle was a bit more uncomfortable in that it felt more like a flu shot and the drug started to feel like a burn. The burning feeling didn’t last more than 5 minutes, if that. It was all bearable, thank goodness. I’m supposed to wear a clear dressing for 1 week. So far, so good – no fever, no pain. When I got home, I did feel like I needed a nap but I think that was just from the stress of knowing it was coming all day and not knowing how much it would hurt. A quick cat nap and I was fine.

I’ve been reflecting on sharing my positive, upbeat attitude in this blog because maybe that isn’t attainable by everyone. Am I setting the bar too high for myself and anyone who reads this? It’s so very different for every cancer patient, and you really cannot compare one to another. Yes, I’ve gone through hell with some of my treatments over the years, but I recover. Not everyone gets to recover. Not everyone has the support system I’m so very fortunate to have. Not everyone has the research capabilities I’ve been fortunate to learn. Some have all the resources and still don’t make it. I’ve been feeling guilty for being a survivor – why me and not the others? It just pushes me more to make a difference in patient care and education. There’s a lot of work to be done and maybe that’s why I’m still here.

I continue to lament the lack of integration within the Cancer Institute. Treating only the cancer and not the entire person is a serious shortcoming everywhere within the medical system. Using only conventional research science and not considering the incorporation of plants/supplements, meditation, yoga, exercise, diet, and so much more is a huge gap in fixing the internal environment that allowed cancer to grow in the first place. I’m finally getting ahead of my cancer, but I’ve also made huge changes to my life – the Block Center’s modified vegan (and organic) diet, exercise, and retirement. There’s more I want to do, and I’ll get there step-by-step. I’m hoping to be part of starting a melanoma support group so we can share what we’re doing to feel better outside of clinic. I want everyone to have access to the same information I’ve been using to build my health.

Now, because I use this part of my blog often, here’s my calendar of treatment since my December post:

12/30 – labs, infusion (I had my internal medicine doctor add some blood tests to my labs and all were within the normal range
1/15 – brain MRI and radiation oncology appt
1/20 – labs, doctor, infusion
2/01 – radiation planning for upper right arm
2/02 – dermatologist
2/09 – electron radiation
2/10 – labs, doctor, infusion
2/15 – electron radiation
2/22 – electron radiation
2/29 – electron radiation
3/02 – labs, doctor, infusion
3/23 – PET scan, labs, doctor, infusion (stable)
3/28 – mammogram (no evidence of breast cancer)
3/31 – Retirement Day!
4/04 – internal medicine doctor appt
4/07 – dermatologist
4/14 – labs, doctor, infusion
4/18 – brain MRI and radiation oncology appt (all clear)
5/05 – labs, doctor, infusion
5/12 – T-vec injections (next injections 6/1)

Results of March 23rd PET scan: Brain clear with January lesion gone. Lungs had no FDG avidity. Abdomen is mostly clear with no FDG avidity. The tumor on my right lateral proximal tibia increased in size (from 1.2 x 0.9 cm to 1.4 x 1.0 cm) and avidity, hence the T-vec injections today. The tumor in my right arm (humeral diaphysis) decreased in avidity and became less well-defined due to the radiation treatments in February. I think my next PET scan will be in August/September.

My thoughts and prayers are with those fighting the fight and with those for whom the fight is over.

Quick Update for September

During my radiation consult it was determined that radiation was not necessary at this point, especially since I was having a gamma knife treatment scheduled. The brain MRI did show a cluster of small tumors in the same area as the first one, so the gamma knife treatment is scheduled for this week.

The x-rays of my left femur confirmed the sclerotic lesion, and my oncologist has recommended that I begin injections of Xgeva to boost my bones’ ability to fight off any potential bone cancer. We’ll be discussing the pros and cons at my appointment this week (labs, oncologist, Keytruda infusion). I’d prefer to wait till after my next PET scan, but I worry about the melanoma winning the battle with my femur. Discussion will include whether I can stay on the Xgeva short term if the next PET scan indicates it’s no longer needed. That might be a good compromise.

Lots happening this week to beat the melanoma beast!

Summer Treatments

It’s been a busy summer and I just didn’t want to ruin the fun by using up any summer minutes writing about cancer. So I didn’t! Now, so much has happened, that I really need to get caught up here. I’ll try to keep it as short as possible. I’ll begin with a timeline and then fill it in with a few comments.

• June 8 through June 12 – low-dose radiation treatments to my lungs
• June 18 – oncology clinic and Keytruda infusion
• June 20 through June 27 – Topsail Beach vacation!!
• July 9 – oncology clinic and Keytruda infusion (and James Taylor concert!!)
• July 11 – 5K (I finished last) and swim party with all the kiddos
• July 16 – brain MRI
• July 19 through August 2 – our Alaskan adventure!
• August 6 – Keytruda infusion
• August 25 – PET scan
• August 26 – oncology clinic, femur x-rays, and Keytruda infusion

Coming up:

• August 31 – brain MRI and scheduling radiation
• September 1 – scheduling gamma knife treatment (probably)
• September 16 – oncology clinic and Keytruda infusion (every 3 weeks for as long as it’s effective)

The radiation treatments really knocked me back down to sofa duty, eliminated my appetite, effected my swallowing, and just had me feeling generally sick for a good two weeks. I still had no energy and no appetite at the beginning of our beach vacation, but the ocean and grandchildren have healing powers and I was back to myself by the end of the week. The vacation was fabulous, and so was James Taylor!

My family and a lot of friends did a 5K for melanoma research. I finished last, but I did it – pretty remarkable! It really shows that you have to keep moving, no matter what. I felt the effects for days, but it was worth it.

The July 16th brain MRI showed a new spot in the very same area as the one that got zapped June 4th. The doctor believed it was from the same incident and wanted to wait to see if any others appeared before he scheduled me for another gamma knife treatment. OK by us – it’s not something you want to do more times than necessary.

Our 2-week Alaskan adventure was one of the best trips ever! We saw such amazing scenery and animals/birds/plants and did so much! We had such a blast and, with all the walking we did, I felt stronger every day. On July 31st, I did another 5K, felt so much stronger, and saw a whale just behind the ship (and was NOT last!).

This week’s PET scan had mixed results, but it was an encouraging report overall. The difference in my body’s scan appearance from May 21st to Monday is quite remarkable and gives us a lot of hope! The lungs are much improved, but the pelvis lymph node and the tumor on my lower right leg are still active, and I have a new sclerotic lesion on the head of my left femur (thigh) bone. My oncologist explained that size and activity of metastases will increase as they’re being attacked by Keytruda, so I can expect to see a mixed result. He said that it’s important to stay the course, because he believes the treatment is working! He ordered x-rays to take a closer look at my femur and, after I told him I wanted my leg tumor removed, ordered radiation to attack it. The combination of radiation and Keytruda seems to increase effectiveness.

After Monday’s brain MRI and meeting with radiology, and Tuesday’s meeting to review the MRI results, I’ll know my schedule regarding radiation and gamma knife treatments.

I’m still following a vegan diet as closely as I can, and I have lost more weight (now down 40 pounds and a full dress size or two). I feel great and I love fitting into clothes I haven’t worn for years! Hope is a wonderful feeling!!

We have been through so many ups and downs, but keep each other strong. Thank you for your continued positive thoughts and prayers! They help to keep me strong when I’m struggling to feel well, and keep my hopes and faith high. I’m fighting strong because of you!!