Prednisone Continued

My Opdivo infusions continue to be withheld due to my elevated liver function blood tests thanks to Yervoy causing autoimmune hepatitis (after colitis). I was down to 10mg of prednisone a day but my numbers jumped up a bit, so last Friday I had to start back on 60mg of prednisone a day for a week, then go to 40mg for a week, 20mg for a week, and then 10mg for a week (or longer), which will put me on track for infusion on January 4th. That was the plan till yesterday’s liver function bloodwork came back with an even higher number (295) than last week’s (152). So today I start five daily infusions of Solumedrol (methylprednisolone) in place of the prednisone, which should provide a faster response. Solumedrol is a potent anti-inflammatory steroid with greater anti-inflammatory power than prednisolone so it should knock down this autoimmune response, and I’m hoping for lower liver function numbers next week! I’ll start back on 60mg of prednisone Monday morning and have my liver function tested again.

Although I voiced my concerns about being off infusions for two months, my oncologist assured me that this is not unusual, and that the Yervoy is still working in my system. Plus, I had no new metastases in my last scan, just already existing tumors.

I asked about scheduling radiation on my right hip now that I’m feeling better, but my oncologist wants me to hold off till I’m on the Opdivo infusions. That gives me a reprieve till January, at least.

Last week I revisited the audiologist for a 6-month checkup on my hearing and ear tubes. I had to have the tubes inserted during my hyperbaric oxygen therapy treatments back in June. My hearing is good, and both tubes were still firmly in place. I asked about having them removed rather than continue to wait for them to fall out on their own (could take another six months!). My concern was how much it would hurt. The doctor said that some describe it as the worst pain they’ve ever felt, while others tolerate it well. He also said that women tend to tolerate it better than men. Well, I knew it wouldn’t be the worst pain I’ve ever endured, but I wasn’t too excited about having to deal with any pain on any level. I finally decided to have one tube removed to see how it went. The doctor said the left tube was a bit crustier and might be the easiest to remove. The shape of the tube is like a bar bell that has to be pulled/maneuvered out of the ear drum. Well, it did hurt and was uncomfortable enough that I chose to stop after one. Now, of course, I wish I had just gotten the right one removed too. Oh well. I go back in six months so, if it hasn’t fallen out by then, I’ll have it removed in June.

Exercise is still going well. I’ve walked as far as a mile, including yesterday, and I feel as though I have more endurance. Of course the prednisone has me in fairly constant motion. I’m increasing my reps, though I haven’t increased weights yet. Completing the exercises and documenting my progress gives me a great sense of accomplishment! I like feeling as though I’m doing something every day to become stronger and healthier.

The Penn State Cancer Institute Melanoma Support Group is all set for its first three meetings. The flier is ready to be printed, a Facebook group has been created (Penn State Cancer Institute Melanoma Support Group), I ordered some resources from the Melanoma Research Foundation to distribute, and I couldn’t be more excited! I created a meeting evaluation form, a survey to learn of members’ interests in meeting topics, and we have a great start on a set of resources to share that include books we’ve read, blogs we follow, and organizations, conferences, and websites we recommend. We’ll meet the first Tuesday of each month from 5:30 to 7:00pm in the Cancer Institute. The first meeting is in T2500 where Cathy Bryan, Cancer and Exercise Specialist, will introduce us to the research being done in the Exercise Medicine Unit (EMU), an exercise room located in the 2^nd floor infusion suite. The EMU opened in late summer 2016, and is part of the Schmitz Cancer and Energetics Lab. The mission of the Schmitz Lab: “The Schmitz Lab is leading a transformation in cancer care, by establishing evidence-based physical activity and nutrition interventions as the standard of care from the point of diagnosis forward, including active treatment, rehabilitation, and for the balance of life.” The most prominent study currently running in the EMU is the EnACT Study, Exercise in All Chemotherapy, an exercise intervention that offers an individualized exercise program for patients currently going through chemotherapy. With 50 patients currently enrolled, the goal is 250. This is the study in which I’m enrolled!

This month, December 17th to be exact, marks the 10-year mark since I was diagnosed with Stage II melanoma. I’ve been Stage IV for a few years now and can barely believe all my hubby and I have survived together! Just last year I was preparing for a December 22nd brain surgery! Our scars are our marks of struggle, strength, and endurance. Cancer doesn’t take a break, but is a journey full of twists and turns, highs and lows. Cancer has been a life-changing event for both of us. We continue to love and move forward through all of it. Together we are facing the future with great hope. I read this in the Lily Oncology On Canvas: Expressions of a Cancer Journey, “Living each day as though it was the most important day of your life is the strongest defiance that one has against the devastation of cancer. One may not always come out on top of the disease, but is always able to be victorious if each day of one’s life brings new wonders, joys, and triumphs.” Every day is a gift with a new sunrise and I feel blessed. Life is too short to be grumpy and miserable! I strive for happiness and good health, and a new day to celebrate life.

Recovery Going Strong

We met with my radiation oncologist on November 7th and discussed treatment options for my right hip. He recommended a 5-course treatment over 5 consecutive days that shouldn’t produce any major side effects. Since I was (and still am) recovering from my last combo infusion of Yervoy and Opdivo on October 12th (plus the flu shot), we decided to wait till I was fully recovered and at least until after Thanksgiving. So I’ll be calling him eventually to set up an appointment to sign the consent and get the simulation done.

I was really impressed with the care I received from everyone at the Breast Center! I had the breast biopsy on November 14th, and the results came back the next day as melanoma – no shock there. There’s no big rush to treat it although I’ll probably have it surgically removed and just get rid of it while it’s still small (9mm). We might wait till after my next PET scan in February to make that decision.

My first scheduled infusion of Opdivo was withheld on November 2nd because I was still suffering from colitis. My second scheduled Opdivo infusion for November 16th was also withheld, even though the colitis was resolved, because my liver function bloodwork was wacky. The ALT normal range is 0-33, and my number was 362. Although it had been climbing through the fall (9 on 8/31, 21 on 9/21, 35 on 10/12, 61 on 11/02), it took a big jump this time. The AST normal range is 0-32 and my number was 205 after being 32 on 11/02. Together, this points to autoimmune hepatitis thanks once again to Yervoy. The prednisone treatment I thought I had successfully avoided was now back on the table. Starting Friday, November 17th, I take 60mg every morning through at least Tuesday the 21st. That’s when I’ll have the labs redone to see if I can start tapering off or not. The prednisone has me cranked up with extra energy and little sleep (guesstimating 3-5 hours per night), but it hasn’t made me extra hungry yet so I’ve been able to maintain my 25 lb. weight loss – yay me!

I completed my exercise sets six times over the first two weeks. Since Thursday I’ve already completed them three times – steroid energy for the win! Today I even completed a goal I’ve been working towards – I walked to the corner and back in 18 minutes. Now my sights are set on a half block roundtrip walk! It felt great to be outside!! I loved the smell of the fallen leaves and watching them swirl in the wind. I felt blessed just to be able to enjoy those simple things – nothing is taken for granted anymore!

We’ve got great momentum on the new Melanoma Support Group! The two women on the committee with me are fabulous and bring a wealth of insights and experiences. It’s amazing to hear how different our stories are and all we have survived! We are made of strong stuff – scars and all!! Our dates are chosen with a February start date, a room is being reserved, and the flier is ready for final approval. We have a great list of potential guest speakers that will certainly get us through our first year. I still want to create a survey to capture participants’ interests on meeting topics to be sure we’re addressing their needs, and an evaluation to gauge what we did right and on what we can improve from meeting to meeting. This fills my heart with hope – a gift we all can give to someone else!

If you made it to the end of another long post, thanks for being on this journey with me! Wishing you and your family a wonderful Thanksgiving together – make some memories!! We’ll have a full house and I can hardly wait!!

 

Recovery Mode

Earlier this week I met with my surgeon to check on the skin graft’s healing. The “islands” of skin coverage are larger. He wants me to leave it exposed to the air as much as possible so it dries. I’m also supposed to gently wash it with Dove and a washcloth to debride some of the gunk. He’ll check again in a month.

After that appointment I met with the Cancer & Exercise Specialist (exercise physiologist) working with solid tumor patients on a research study, “Exercise in All ChemoTherapy (EnACT)”. The purpose is to learn if one-on-one exercise counseling will help one become more active, resulting in fewer side effects, less cancer related fatigue, improved quality of life, and improved function. She’ll provide a customized exercise prescription to follow and chart at home. The program includes cardiovascular exercise, strength training, balance training, flexibility and range of motion, and relaxation and rest. It was a no-brainer and I signed the informed consent.

Thursday was my PET/CT scan with labs, oncology, and infusion (1st Opdivo only, w/no more Yervoy) also scheduled – a long hospital day. Bill had to wheel me to nuclear medicine because I was too weak to walk that far. I had been feeling ill since my last combination Yervoy-Opdivo infusion 3 weeks prior, so I wasn’t feeling very hopeful about the scan results. Immediately after the scan I scarfed down two granola bars (I actually felt hungry!), and then we checked into the Cancer Institute.

After the scan and check-in to the Cancer Institute, we met with the exercise physiologist. She reviewed my notebook with all of the PT exercises I’ve done, and tried out a few exercises with me. She’d prepare the exercise program and deliver it to me while I was in infusion later that day. She also provided me with some equipment to use at home to do my exercises.

Scan Results: Overall, big picture, the results were fairly better than I expected because there was nothing new. There were two “old” things that need attention. First is the right outer lower breast nodule that was 8mm and mildly FDG avid 3 months ago, and is now 9mm and moderately to intensely avid. It’s still small, but moving in the wrong direction, so it was recommended to follow-up with ultrasound. Second is a new intensely avid linear lucency in the right hip that appears as a fracture. Since the rest of the right hip showed slight metabolic improvement, x-rays were recommended to rule out a fracture.

Right Breast Ultrasound Results: Because it had been 6 months since my mammogram, which was clear, I had a 3-D mammogram and ultrasound. It was confirmed that it’s a small solid tumor, but cannot distinguish between breast cancer or melanoma. I’m scheduled for a quick biopsy on the 14th to help make that determination which will decide treatment options.

Right Hip X-ray Results: “No radiographic correlate for abnormality in the anterior column of the right acetabulum seen on PET/CT.” In other words, no fracture!

Because I was still suffering the side effects of the Yervoy-Opdivo combo infusion from 3 weeks ago, my oncologist withheld my Opdivo infusion – I’ll start in 2 weeks. He prescribed a higher dose (60mg/day) course of prednisone to try and break me out of this sickness cycle and end the diarrhea. Well, my appetite improved a bit during Thursday afternoon. I woke up Friday feeling a bit better and decided to wait and see if I would have another episode of diarrhea before starting the prednisone (I really don’t do well on it!). I’m still waiting for that episode, knock on wood, so I haven’t taken any prednisone yet. I’m certainly not ravenous, but I’m trying to eat a little more and actually feel hungry at times, and I haven’t lost any more weight. I’m also finally starting to get some sleep, which the prednisone would have fully robbed from me. So I think I’ve turned a corner and am improving. The exercise feels good and I think it has helped my mood and ability to sleep. At least I’m not a constant lump on the recliner anymore!

My thyroid function had a bit of a change from low functioning to higher functioning, so my levothyroxine dosage was decreased. Yervoy had effected it 3 years ago.

This coming week we meet with the radiation doctor to review all of these results. There’s no urgency in immediate treatment, so we’re inclined to let my body continue to recover a bit longer. We’ll see what he recommends and go from there.

I finally made the move to begin a melanoma support group at the Cancer Institute. The nurses put me in touch with two other women with a similar interest and they’re both onboard to help. We meet for the first time on the 13th. This is something I’ve been wanting to do for years, and it gives me a great feeling of purpose!

The Summer of HBOT

The longer I wait to post, the harder it is because so much happens each month! The trouble is that in the cancer world, if you don’t post regularly folks start thinking the worst. Well, we’ve put off “the worst” for a bit longer :-). I’m doing well!

In my last post I mentioned the bulge in my left pectoralis muscle and the discussion over possible treatments. Well, I ended up having radiation at the end of June. The radiation consultation was on my birthday with the planning session a week later. I had five treatments each day for five days (June 27-30, July 3). My left shoulder area still feels heavy as a result which I guess will dissipate over time. In my last PET scan, the “bulge” was getting smaller.

In May I began HyperBaric Oxygen Therapy(HBOT) treatments every weekday. During my ninth dive I experienced ear pain and had to visit an ENT doc to get tubes in my ears. Otherwise it’s been quite uneventful, thank goodness. From the time I leave the house till I get back home again, it’s about four hours. Next Tuesday is my 70th and final treatment. It’s been quite the commitment and the sacrifice of my summer. The good news is that it’s working (VERY slowly) and my wound is filling in. It won’t be completely skin graft ready by next Tuesday, but it’s gotten me a lot closer. I also had outpatient surgery last Friday to complete the debridement in areas that would have been too painful to debride while I was conscious, and to drill small holes in the exposed bone in order to encourage tissue growth in that area. I had this bone drilling procedure two years ago and it was quite successful then. My pain level seems much lower since Friday, and I even decreased my pain meds, going off the long-term pain patch Sunday night. Now my dressing is just wet-to-dry twice a day, which is a bit simpler. I do NOT miss the Mesalt dressing at all!! That bugger hurt!!

I had been on Keytruda infusions every three weeks since May 29, 2015 – over two years! While I’ll say that it kept me alive, it never got me to remission. Every PET scan, every three months, had some new suspicious area, inflammatory spot, and/or metastases. It was always small, but was always something worrisome. My last PET scan was the same way with a very small spot in my right breast and inflammation back in my right hip, so my doctor finally decided to change things up. My last infusion was a combination of Yervoy (ipilimumab) and Opdivo (nivolumab), both still immunotherapies like Keytruda. Yervoy stimulates T cells to fight melanoma and Opdivo allows those T cells to recognize melanoma and attack it. Good combo, right?! It was expected that I would get diarrhea from the change in drugs, but I didn’t. I also expected a full body rash from the Yervoy, which I’ve had by itself before. I didn’t get the rash, but I do get a new itchy red welt every few days. That’s it for side effects so far – very manageable! I’ll get a total of four combo infusions, and then be on Opdivo by itself depending on the next PET scan.

The great news is that my tumor load continues to be small. With new metastases showing up in every PET scan we’re devastated for about 24 hours because we’re always hoping for no evidence of disease. Then we get back in fight mode and remind ourselves of the small tumor load. We’re at least grateful for that! Sometimes I have to look at a ruler and remind myself how small mm and cm are!

So, coming up is my next combo infusion (#2 of 4) and finishing up the tissue growth in my wound so I can get the skin graft to finally close it! Remember, the initial surgery that started this wound was March 10th. It will easily be six months from that surgery till the skin graft is scheduled in late September (I hope!!). I’m hoping that my next post will be about the skin graft!

With the skin graft done, I’ll rejoin the gym and do that regularly to lose steroid weight and get strong. They know me there, so I know I’d be in good hands. I’m hoping that with the wound finally closed, I’ll be able to ditch the brace a few times a week to help strengthen my left side. I’m anxious to be more active, especially outside. This week I’ve had two people tell me that they think I’m moving better already :-).

Think good thoughts for granular tissue growth in the wound!!! I look for it every time I do the dressing change!

Slow Progress

Patience seems to be the name of the game!

I had a PET scan January 19th which showed less inflammation overall than the prior scan, and also showed that the brain edema is down to October’s level (I need to get to May’s level of no edema!). It also still showed a lesion in my right hip that has remained at 8 mm for a number of scans but had more intense avidity this time, so I’ve already had one fraction of radiation (February 10th) to treat it which was successful in treating the same thing in my left hip over a year ago. Done! The only other thing to be treated is the bothersome soft tissue tumor just below my right knee. It has decided to grow again after two T-VEC injections last May/June and radiation in July. It will be gone by mid-March after some quick out-patient surgery under local anesthesia.

I’ve had five weeks of physical therapy (PT) – 10 sessions total – and have made some progress. For example, my left-hand grip strength improved from 7 to 15. In comparison, my right hand’s grip strength is 40. That’s improvement but I still have a long way to go. It continues to be frustrating to tear open envelopes, deal with ziplock bags, read anywhere other than a table, and open cereal/cracker/pretzel bags, etc. In the big picture, minor stuff.

I have some muscles firing in my foot though foot-drop is still a major issue which affects walking. My balance is improving, but any uneven surface presents a challenge. I’m still using a cane when I leave the house to provide some extra stability, and I still need a railing on both sides of a stairwell to feel safe navigating the steps. My shoulder has a lot more movement now and I even found myself swinging my left arm while walking – that was a good day! I’ve been driving myself short distances since mid-January.

The neurosurgeon (January 26th) said that as the edema goes down, my brain must re-establish the neural connections that were temporarily lost. He ordered a brain MRI for April when I see him again. In the meantime, I’m building my strength, working my muscles, and moving the body parts that won’t seem to move on their own. I ride a stationary bike for 10 minutes at each PT visit and have increased the resistance from 0 to 5 (out of 20) and maintain a speed at or over 60 mph. I also walk on a treadmill for 15 minutes at the same visit and have increased the speed from 0.8 to 1.2 mph (but still have a death grip on the handle). Even with that, the therapists see the improvements I’ve made better than I.

I also started weekly personal healing yoga sessions January 16th which complement physical therapy perfectly. I’ve learned different deep breathing exercises, meditation, spinal flexes, and more – all from a chair. I’ve used some deep breathing and visualization at PT just before doing a difficult exercise (high marches) with success. I silently chant a mantra when I have trouble falling asleep. It’s good stuff!

So, I’m making slow progress, but that’s better than no progress at all! I’ve come to understand that when the doctors say months for recovery, they really mean months and it’s only been one and a half months since the surgery. I’ll continue to work hard at getting my left side functioning closer to normal and come out of this more fit than I’ve been in a long time. My goal of a 5K might not happen this summer, but I’m ready to sign up for next summer!

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.

Ending 2015 on a Positive Note

The first half of 2015 was a bit of a disaster. I had pneumonia, several surgeries and a skin graft, and a week of radiation. Ugh! I rebounded with two 5Ks, great vacations, birthday celebrations, a wedding, a commitment to my Block Center modified vegan diet, and mixed results on my PET scan (which is better than it could have been and better than many I’ve had). I made it past my 8 year anniversary, December 17th, of my original diagnosis of malignant melanoma. Eight years! That’s saying something! I’ve got some staying power!

So, the update – this is what has happened since my last post:

• 9/16 – labs, clinic, Keytruda infusion
• 9/17 – gamma knife treatment
• 9/18 – travel to NC for grandson’s birthday weekend
• 10/04 – bridal shower
• 10/07 – labs, clinic, Keytruda infusion
• 10/10 – granddaughter’s birthday party
• 10/15 – brain MRI, two dr. appts.
• 10/28 – labs, clinic, Keytruda infusion
• 11/03 – first Pilates class
• 11/10 – Pilates instructor failed to let me (only me) know that class was cancelled – end of Pilates! Really!
• 11/14 – wedding!
• 11/17 – started water aerobics instead of Pilates and love it!
• 11/18 – labs, clinic, Keytruda infusion
• 11/19 – water aerobics
• 11/24 – water aerobics
• 11/26 – I cooked Thanksgiving dinner!
• 12/01 – water aerobics
• 12/03 – grandchildren’s Christmas pageant
• 12/08 – watched grandson’s ice hockey practice
• 12/09 – PET scan, labs, clinic, Keytruda infusion, x-rays of hip
• 12/15 – water aerobics
• 12/21 – Radiation oncology appt.
• 12/22 – Radiation oncology planning session

The 12/09 PET scan showed mixed results again, but the bottom line is that the amount of disease left is small, really small. The oncologist says it would fit in the bottom of a dixie cup :-). My pelvis lymph nodes were clear, my lungs were clear, and my brain was clear. The nodule I’ve had on my lower right leg for months (right anterior pretibia) was still moderately FDG avid and slightly smaller (from 1.2 x 1.0cm to 1.2 x 0.9cm). (FDG is the radioactive tracer in a PET scan and stands for FluoroDeoxyGlucose. No uptake would mean no disease and avid uptake means there is disease.) The left femoral head (hip) lesion that showed up back in August and was mildly FDG avid and ill-defined is now intensely FDG avid and is 1.9 cm. What’s new is a nodule on my right arm (proximal right humerus) that is intensely FDG avid and measures 1.1 x 1.3 cm, a little bigger than the one on my leg. Oh well.

The attack: For the two subcutaneous nodules on my right leg and arm, we’re going to use the new FDA-approved T-VEC injection. This will be injected directly into each tumor every two weeks until they’re gone. SO MUCH BETTER than surgery! I will be one of the first patients to receive this at HMC outside of their clinical trials. Plus I’m going to have a one fraction course of radiotherapy on my hip lesion – that’s what today’s planning session was for. I’ll continue with the Keytruda infusions through all of this, so I’m VERY hopeful for this 3-pronged approach! The melanoma I have does not like the combo of Keytruda and radiation, so adding in the live virus of T-VEC should really give it a hard knock. Combined with diet and exercise, what cancer cells can possibly survive?! Not mine! This is it! These new drugs just keep getting better and better. As my surgeon said, “You just have to live long enough for the next new drug.” That’s what I’m doing and it’s working!

Yes, I have very high hopes, and maybe too high. So what – hope is what keeps me going. If the Keytruda-radiation-TVEC combo doesn’t quite do the trick, at least I’m that much closer to something that will do it. The trick is staying well enough to make it through all this crap, and the second half of 2015 has been stellar. I feel great, I’m happy, and I’m entering 2016 in the best shape I’ve been in for a long time.

With many thanks to those friends and family who have stayed the course with me! This fight occupies a lot of my time and thoughts, but your prayers, positive thoughts, and pixie dust do a lot to help me keep going. Having a loving and supportive hubby by my side helps a lot! Bill and I appreciate it all!!

Best wishes for a wonderful Christmas and for a very happy and HEALTHY new year!!

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!!