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!!

The Block Center visit

After much research, we decided that the Block Center for Integrative Cancer Treatment was a center we needed to visit. Dr. Keith Block wrote Life Over Cancer, which I’ve now read twice and it has become my cancer “bible.” We drove to Evanston, IL, last week for my appointments on April 30th at the Block Center. We were there all day with appointments with a medical assistant, dietician, biobehavioralist, medical oncologist, and finally with Dr. Block. They took lots of blood for extensive lab work, and I’ll have a consultation regarding those results in two weeks. In the meantime, a lot of change is happening:

• My diet is now a vegan diet (no dairy, no meat except cold water fish).
• I need to emphasize whole grains and limit refined grain and white flour products.
• I need to get my protein from plants such as legumes, soy foods, seitan, deep-ocean cold-water fish, and organic eggs.
• I need to replace all dairy products with soy, rice, almond, or oat equivalents.
• I need to limit my fat intake and choose healthier fat sources such as ground flax seeds, walnuts, olive oil, avocado, nuts and seeds.
• For sweeteners, I need to switch to agave, rice syrup, barley malt, or stevia.
• I’m gathering recipes, and the Block Center keeps adding new ones on their FaceBook page and the Life Over Cancer Blog.
• If I divide my body weight in half, that’s the number of ounces of fluids I need to drink each day, including green tea, filtered water, and herbal tea.
• I take a long list of supplements every day:
  • ArcticBlox – The Block Center’s highly concentrated omega-3 fish oil inhibit some steps in the carcinogenic process, which helps maintain the noncancerous nature of human cells and tissues.
  • Curcu-Essentials – Curcumin is derived from the Indian curry spice turmeric which possess potentially powerful antioxidant capabilities.
  • D-Essentials – Essential for the development of a healthy bone structure, and can aid in cancer treatment.
  • Essential Whey – This protein is a rich source of the essential amino acids needed by the body. It contributes to general wellness and provides immune support. I add this to my morning smoothie.
  • Maximum C – This time released vitamin is a very powerful antioxidant.
  • Melatonin PR – I’m taking this to try and resolve my fitful sleeping, but it also supports normal immune function.
  • Nutri-Essentials – This contains a wide range of ingredients that support the body’s natural intake of nutrients.
  • Pantothenic Acid – Vitamin B-5 is a coenzyme that plays an important role in energy production.
  • Probiotic Essentials – Used for gastrointestinal health.
  • Resveratrol – This compound, found primarily in red wine, has important functions of antimutagenic, anti-inflammatory, and antioxidant activities. It is strongly associated with inhibiting tumor growth.
  • Turbo Greens – This is a powerful green food supplement made with primarily organic vegetables, and provides a wide variety of vitamins, minerals, enzymes, antioxidants, essential amino acids, and many other important phytonutrients. I add this to my morning smoothie.
  • UBQH – CoQ10 provides immune support.
  • Ultra Reishi – This supplement is a combination of green tea and Chinese medicinal mushrooms, intended to enhance immune function. One dose has the medicinal effect of 46 cups of green tea stripped of its caffeine. Green tea has antioxidant and anti-proliferative properties and has been shown to induce chemical changes that could potentially cause harmful cells to commit “suicide.” The mushrooms, Red Reishi and Chaga, are both known as possible immune boosters.
• I need to adjust my bedtime routine to turn off all electronics 1 hour prior to bedtime, have the bedroom temperature a steady 68 degrees, and have the room completely dark. I also need to set a bedtime and rise time that I can stick to most days of the week.
• I need to be sure that I get the three essential components of physical fitness: cardiovascular conditioning, strength training, and flexibility.
• I need to use meditation twice a day to relieve daily stressors.

Dr. Block agrees with my oncologist’s plan for my next treatment (Keytruda). He is available for a consultation if anything changes to discuss my options. He suggested that I keep track of the clinical trials for melanoma, and not rely solely on my oncologist. For example, he gave me the contact information for a clinical trial at the National Institutes of Health. I’ve already been in contact and have completed the in-take form. If nothing changes I’ll have another round of lab work and a consult in August~September.

These are a lot of changes, but I’m motivated to do them all so I can finally get back into remission and beat this. Bill is open to trying anything with me, and we’re already on our way.

Thanks again to all the support we continue to receive from our friends and family! It means SO much and helps me to remain strong!

note: The info about each supplement above came from Dr. Block’s information sheets provided for each supplement I’m taking.

Skin Graft – Done!

On Friday, April 3rd, the skin graft finally happened. The surgery lasted about an hour and a half, and I was home before lunchtime. The site on my shin had a Xerform bolster dressing stitched on with extra 4X4 gauze squares, a gauze wrap and an ace bandage from my toes to my knee. The donor site on my thigh had a Xeroform dressing and a clear dressing on top of that. Directions were to keep my leg raised to prevent swelling and to eat lots of protein to encourage cell/tissue growth. I’ve been dining on lots of meat, cheese, nuts, and Greek yogurt.

The pain was higher than I expected in my shin, and the donor site burned as expected. It feels like the worst brush burn ever! It was also leaking out of the clear dressing, so I dug into my leftover surgery supplies and added an additional dressing to keep myself dry. Extra strength Tylenol helped, and I was allowed to alternate it with ibuprofen every 3 hours.

Today, April 8th, I had the bolster dressing removed. For the first time ever, I felt faint and had to lay down till it passed. I decided not to watch after all, especially since it was painful having the stitches removed, and didn’t I look till the bolster was off. The graft looks really good except for a small spot where the skin folded. My skin was bright red around the site, which explains the pain I was having. For most people, the bolster is not painful, and I think it was the irritation around the site that was causing my discomfort. My foot/ankle were not swelled at all. Just to be on the safe side, I was put on a short course of an antibiotic, Bactrim. Daily dressing changes now commence, exactly as the daily dressings I had been doing prior to the graft.

The clear dressing was removed from the donor site, and the top of the Xeroform was blotted dry with gauze (it was slimy). This is to remain, without any other dressing on top, until it dries and the new skin “pushes” it off. I can trim the Xeroform as it dries and curls around the edges. The directions were to go home and use a hair dryer on the cool setting to dry the Xeroform. The more it gets to dry, the better. I worked with my skirt hiked up my right leg all day, and it’s looking a lot better – drier already.

I go back in a week just for a quick eyeball check, and then a week later for a surgeon checkup. And then a week after that I have all-day appointments at the Block Center. I’m so excited to fill in the pieces of the puzzle surrounding nutrition, exercise, etc. I even have an appointment with Dr. Block at the end of the day. I think I’ll take my book for his autograph! Cancer won’t stand a chance after I make the changes that are recommended to me that day!!

Last update for 2014

It’s been two months since I last posted. When I’m feeling well, I don’t like to post to the blog because I don’t want to think about infusions, doctor appointments, scans, etc. However, I also don’t like to post when I’m not feeling well, because I don’t like admitting that’s the case. I had a bit of both going on the last two months, so I kept putting off the next post. Enough procrastination! I want to start 2015 anew and put all of the 2014 cancer stuff behind me, so here’s the update.

I finished my 4th and final Yervoy infusion on December 2nd. At my oncology appointment that day, I learned that my thyroid was functioning a bit on the low side and got a prescription of levothyroxine to take care of that. I had only started feeling tired, so this was a quick and easy fix. My doctor had previously said that this might be a side effect I would experience, and had actually seen it as a positive thing since other patients who had the thyroid effected seemed to also have the best results from the Yervoy. So YAY! However, I started with a headache during my 3rd infusion on November 11th, and it never went away. He ordered a brain MRI right away since melanoma can be so darn tricky. Fortunately, the scan was clear but did show that my pituitary gland was enlarged and that is what was causing the constant headache. I was put back on prednisone, and had relief within hours! How wonderful to be headache free!! Of course the prednisone also helped with the rash I had been fighting since the 1st infusion. (Side note for those suffering from the rash: My dermatologist recommended “soak and smear” for treating the whole body rash. Soak in plain water for 20 minutes, get out of the tub, don’t dry off at all, and immediately smear steroid cream over your body. Put on an old pair of PJs. Repeat nightly as often as needed. I saw relief in 4 days.) The prednisone made me ravenous and full of energy, so I gained back the pounds I lost after being on prednisone the last time but also accomplished a lot every day being the energizer bunny. Four or five hours of sleep a night was about the max. Now I’m down to only 1 prednisone a day for another week, so my appetite and sleep have finally normalized. All in all, the side effects were doable and I was able to function throughout. When I say function, I mean travel, babysit the grandkids, go out to eat, take long walks, etc. We didn’t sit very much!

I’ve made some big changes to my diet, moving away from most meat and really amping up the vegetable intake and using mostly organics. It hasn’t been a difficult change at all, and I’ve been surprised at how little I’ve missed meat. I also think eating more veggies makes me feel better. I make my own green smoothie in the morning, and I’ve found that’s really a great way to start the day. I love Indian and Thai cuisine, so I often have that for lunch. I’ve tried some new recipes (mostly soups so far – mushroom barley and tomato basil), and want to start the new year trying some more new dishes. I enjoy cooking when I feel well and am not exhausted after work. I’m planning to start the new year with Whole Living’s diet recommended by Ann. It looks like the perfect way to reset after the crazy holiday eating.

Next week I have my second appointment with the only integrative medicine doctor in the Hershey Medical Center system. We’ll review the blood work he requested and see what recommendations he has for me. I also contacted the Block Center for Integrative Cancer Treatment, and am gathering up the information they have requested so I can schedule a visit there in a few months. Their book, Life Over Cancer, has been a great resource for me. My oncologist and his nurse are on board!

My next scan is scheduled for January 27th. If I’m finally in remission, I’ll be shocked. I’m actually not expecting to hear that – maybe I’m just trying to protect myself from being disappointed. It’s been two years since I’ve been in remission and it hasn’t been all doom and gloom. Except for the hospital stays for the IL2 treatments and recovery, life has been really fantastic! My plan is to treat my melanoma as a chronic disease and keep working to prevent it from spreading. It’s what I’d have to do even if my scan is clear. I need to make my body inhospitable to cancer, which means I still have more changes to make to be the healthiest I can be. That’s my New Year’s resolution! Here’s to the healthiest you can be too! Thanks for all of your support during the past year – we couldn’t have done it without you!!