Needle Biopsy Results & HBO

This week we received the needle biopsy results of my left pectoralis muscle – positive for melanoma. This was devastating for about 24 hours and then we got ourselves back into fighting mode. We met with my oncologist yesterday, and the decision was made to wait until after my next PET scan. Because this met is so deep within the muscle, it would be like having a lumpectomy if it was to be removed surgically and would involve a hospital stay. It’s possible to have radiation, and that doctor is also being consulted along with two surgeons by my oncologist. We’re waiting to see if it’s an isolated tumor or if more pop up in the next three months. This way, we’d do the surgery once and get them all. It seems like a logical decision. In the meantime, I’ve already received a call that my radiation doc wants to schedule a consult.

My oncologist also made changes to my prescriptions to help me manage the pain which hasn’t lessened. I now have an extended release drug, something to help my left knee, and am continuing with all of the short-term drugs I’ve been on. Hoping something works!

I had a different experience in the hyperbaric oxygen therapy (HBO) session today. It was my 9th “dive” and as soon as the nurse turned on the pressure I realized that I couldn’t pop my left ear. The pressure was building and I was beginning to feel pain. I tried everything to pop it with no luck. The nurse reversed the pressure and got me out of the chamber as quickly as possible. The doctor was there to check my ear and he announced it as a “T1”. He said there was redness and even a little blood. I had to be sent home with instructions to pick up some Afrin and use it at bedtime. I also have to take it along to treatment tomorrow. I had some congestion last night, but my ears felt fine this morning. Now, my left ear is still closed. If I can’t resolve this, I’ll need to get tubes in my ears. Sigh.

Over the weekend I had to switch to using Dakins (bleach solution) in the dressing because the pseudomonas was back in my wound. Tuesday morning I learned that Dakins kills granular tissue! Last night I stopped the Dakins and went back to using the Mesault (sodium chloride). I’m hoping my dressing change tonight shows that it was the right move. Two steps forward, three back!

Since I’m running out of insurance-covered physical therapy sessions, today was my last session for my left knee. It’s still giving me problems (patellar tendonitis), so I’m going to request a referral to an orthopedic doctor who might be able to recommend a different brace that works better with my knee but still helps with foot drop.

In happy news, Bill and I were able to pull off our daughter’s nursing graduation party! Of course, Bill did 99% of the preparations outside and inside and I did the planning. Our daughter-in-law and my mother were HUGE helps in the kitchen making delicious food and keeping the kitchen in tip top shape! We couldn’t have done it without the extra help!! Our daughter’s friend, Courtney, did the decorations which made it look like a party. Our youngest son brought along his amazing mac and cheese and was part-time grill master. Our oldest son helped get the grill back on the deck, made grocery runs, picked up my parents, kept an eye on the kiddos, and helped behind-the-scenes. Our son-in-law was an amazing lifeguard. I still ended up being on my feet too much, but it was worth it for a really happy, celebratory day!!

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!

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!!

Hello Tissue!

I had to post right away with my great news! I just did my dressing change, and the bone is COMPLETELY covered with tissue! Woo-hoo!! I can still see the drill holes, but there’s tissue all around them. It has some distance to grow to reach skin level, but I can live with a divot in my shin :-). I wish I could post a picture, but then you wouldn’t be able to eat your lunch! Ha! Thanks once again for ALL of your positive energy, prayers, and pixie dust!

More Surgeries

I can’t even remember if it was 24 or 48 hours after my last post that I learned all margins from the tissue removed on February 6th were positive. Let’s just say that I lost it. Thirty minutes of feeling like I couldn’t do this anymore finally rolled into a request for chocolate marshmallow ice cream to give me the resolve I needed to keep fighting. Yup, that’s all it took – some snuggling with my hubby and a bowl of ice cream. I’m back in fight mode!

In an absolute whirlwind of planning February 12th, I had surgery scheduled for the next day to have a wider and deeper excision made. Because of all the scar tissue in that area, the surgeon had difficulty determining where the tumor ended, hence positive margins. This surgery would try to get all of it, and it DID. He excised down to the bone and tendon, even shaving some of the bone where the tumor stopped, just in case. He used a vacuum dressing that applied negative pressure to the wound and drained it, encouraging tissue growth needed for an eventual skin graft.

The vacuum dressing supposedly creates tissue growth at 400% faster than without. I had to carry around a battery pack that also captured the drainage attached by a long tube that I threaded up through my jeans. It was noisy constantly. All of that was minor at the first dressing change. A visiting nurse came to change the dressing every M-W-F for almost 4 weeks, but the first one I will never forget. Let’s just suffice it to say that it was way more painful than either of us expected. Even the surgeon was surprised at the level of pain I experienced. The nurse believes that the burning/stings were from nerve endings, and that the major pain came from the exposed tendon and bone (tibia). In hindsight, the surgeon could have prescribed a numbing agent to be added to the foam prior to removal. You can imagine my anxiety and stress as I anticipated each new dressing change. Fortunately, the tissue did regenerate, the nurse added a barrier to my tendon and bone and, after the first week, the dressing changes became more bearable, but never pain-free. Whew! Glad to have survived that! Once again, Nurse Bill was wonderful!

I revisited the surgeon on March 10th. While he was pleased with the tissue growth, I still needed tissue to grow over the bone. He scheduled more surgery for March 13th to drill holes in my tibia to encourage that tissue growth. I asked if it would be painful (it sounds painful, right?!). He looked at me as though I had asked a silly question, and said of course not – it’s just like a dentist’s drill, very fine, very small. He listened to my experience with the vacuum dressing, including the continued pain after the dressing change when the pump was turned back on, put the vacuum on hold, and switched to a wet/dry dressing instead. Relief finally! No battery pack, no tubing, no noise. The silence was most wonderful!

In the meantime, I found a new, very small tumor in my right thigh, as I often do. Really, there have been times my leg is like a popcorn machine! The surgeon made time in the OR schedule to also remove that at the same time he did the drilling on March 13th. Done.

This week the tissue is growing over the bone and my thigh incision is healing well (not a big deal). The visiting nurse now comes on Mondays and Thursdays, and I do the dressing change myself all other days. I actually like doing it, probably because I have complete control over the entire process. The other good news is that I can finally take showers again. So wonderful! I’m not taking any narcotics as of Saturday, and the pain level is manageable – no problem. I’m not supposed to walk much more than what is required of normal daily living (bathroom, meals, etc.). I really try to avoid any kind of bump or movement other than a normal step – I really take my time and watch where I’m placing my foot. Level surfaces are the best. I’m not driving yet because I’m not sure that I could move quickly enough in an emergency, like slamming on the brakes.

My next appointment with the surgeon is March 31st, with the skin graft finally scheduled for April 3rd. Two weeks off my foot will be needed to be sure that the graft takes. Then I’ll be ready to go crazy!! I’m sad that I’ll miss Easter with my family, but realize the importance of making this graft work after waiting 7 weeks for it.

I’m feeling great and started back to work on Monday. There’s so much to do and it was starting to stress me out. One month of FMLA no pay was enough to give me the stress-free time I needed to concentrate on healing. And I’m off the chocolate marshmallow ice cream diet!

Thanks to all who have sent cards, visited, phoned, got me out of the house, brightened my home with flowers and wonderful scents, and have continued keeping me in their thoughts and prayers. It all makes a difference in my day and keeps my spirits high. I appreciate you all SO much!

First 2015 Update

As I reread my last post from 2014 I didn’t know if I wanted to laugh or cry. How quickly things can change! The first weekend of January I came down with both a stomach virus and a respiratory virus. The latter quickly turned into pneumonia which had me spending the majority of my time on the sofa. After two visits to the doctor and given two different antibiotics, I was still feeling horrible – no energy or motivation, no appetite, dehydrated, and still feeling as though I had been run over by two trucks. I was trying to work, but that was just making it worse. I actually had to cancel my appointment with the integrative medicine doctor because I felt too sick. Too sick to go to the doctor, sheesh.

On January 27th I had my PET/CT scan and oncology appointment. The bloodwork showed a severe adrenal gland imbalance due to the Yervoy treatments, which was causing my “hit by a truck” feeling. Well, that explained the bulk of January! After just a few doses of hydrocortisone, I was feeling more like myself – finally! All month everyone, including me, was wondering why I wasn’t able to bounce back from the viruses/pneumonia, and all it ended up taking was the right medication. I only wish that the dots could have been connected two weeks earlier. January was a bust!

The scan results were alright. The oncologist was more pleased than me – I’m like that sometimes. My lung tumor was smaller and showed less activity. Since I still have the IL2 and Yervoy treatments’ drugs working in me, we’re going to wait and watch. If the tumor doesn’t go away completely, radiation will be used to zap it out of there. There was not much change in my right shin (same size and activity), and the tumor in my right thigh was light gray (as opposed to active black). The decision was made to remove the two tumors in my leg, so an appointment was made with the surgeon. I was able to point to the tumor in my shin, but no one could feel the tumor in my thigh. Since I wasn’t onboard for a large excision with a guess on the location of the thigh tumor, everyone agreed to wait and see till the next scan. Surgery was scheduled for removal of the shin tumor, knowing that a skin graft would be needed.

While all of my leg tumors had previously been removed via local anesthesia, I wimped out this time and opted for general anesthesia. I just needed to let go of the stress and get a nice nap out of it. The tumor was removed last Friday, but the skin graft was postponed. To be sure that the surgeon got all of the melanoma, the tissue was sent to pathology and the stain test takes 48 hours. In the meantime, I have a temporary gamma graft which still leaves a big hole in my shin. I had to remove the dressing on Sunday. Taking the two wraps off was easy enough, but the gauze stack felt as though it was glued on. That removal took a lot of sweat, but I got it off – totally unprepared for the site’s appearance. Yuck! It’s painful – burning – and I have difficulty walking. The surgeon’s nurse has been very responsive to my inquiries and has helped to figure out pain management. I’m taking extra strength Tylenol alternating with ibuprofen every 3 hours which seems to help take the edge off. The next surgery is scheduled for this Friday with the hopes that the surgeon can finish up with a skin graft.

Since I’m finally out of sick leave, I’m very grateful to have a job that I can do from home temporarily. I felt so far behind from January’s absences, that being able to get caught up certainly relieves some stress. Also relieving stress is my hubby who stays on top of the laundry and dishes, and is expanding his cooking skills. He is so attentive to any need I have and has me spoiled beyond belief. We both miss seeing our grandchildren terribly, so we have the best motivation to get beyond this as quickly as possible, and as healthy as possible. Can’t lie – thoughts of retirement happen a lot more often!

January was a bust; February is looking like a bust too. Come on March! It won’t take much to outshine the first two months of 2015! As always, your prayers, good thoughts/vibes, and pixie dust are so VERY appreciated! Cancer sucks!!!

Next Steps in Course #1

I have been feeling stronger each week, and expect this week to be my best since my hospitalization back in March. . . just in time to start the next chemo drug! I’m scheduled for labs this Friday. May 11th will be my 28th day after being discharged from the hospital, so at bedtime on Sunday I’ll begin taking temozolomide (temodar, TMZ) for 21 days with the last dose on May 31st. I’ll also take ondansetron 30-60 minutes prior to taking the TMZ and again in the morning to offset the nausea, a common side effect. Other common side effects include loss of appetite, constipation, tiredness, weakness, and headache.Temporary hair loss is also possible. If the nausea can be controlled, I think I’ll be able to handle the rest. After May 31st I’ll get 2 weeks off and then get my next PET/CT scan on June 16th. Fingers and toes crossed for improved results! The date tentatively set for the port placement, oncology visit, and hospital readmit for IL2 is Thursday, June 19th. That would be the start of course #2, and doing this all over again.

If you have some good strategies for surviving a hospital stay, I’m listening. The problem is that while I’m there I have no interest in reading, watching TV, or listening to music. I’m just watching the clock, waiting for the next treatment and trying to survive. I’m probably making it worse than it has to be.

 

Needless to say I’m trying to plan some fun activities prior to June 19th. If I thought being in the hospital in March was tough, I don’t know how I’m going to survive being there in June :-(. We’re talking about some possible day trips between now and then. I’m hoping to make it to the beach, and a neighbor and I aleady have a Phillies day planned. Of course, the pool will be open soon and I’ll want to enjoy that before I have the port again. I’ll enjoy getting my flowers planted, and reading some good books. It will all be good! 

These past weeks have been incredible with such an outpouring of friendship and support. I’ve received inspiring notes and cards, beautiful flowers, an overflowing planter, a special harvest, an angel all the way from Slovakia, and a collaboratively knitted shawl full of blessings, love and positive thoughts. I even had a song dedicated to me – so very touching! It all helps me to remain strong and have faith that I can beat melanoma. 

May is Melanoma Awareness Month, so check your skin, check a loved one’s skin, stay out of tanning booths and use sunscreen. 

Thanks all!

New Battle Begins Tuesday

I can’t believe it’s been over a year since I last posted. A lot has happened on the cancer front. I was on leukine for about 9 months (gave myself shots in the stomach, two weeks on – two weeks off). During that therapy I had a few small tumors removed from my right leg, all above the chemo line from the isolated limb perfusion (November ’12). I also had physical therapy on and off trying to get my ankle and foot in better working order. My ankle is still partially frozen, but better than it was, and my big toe will forever point skyward. I have some neuropathy in that foot, but none of this keeps me from doing anything so all is well. I’ve had a great year with lots for which to be extremely thankful!

The downside is that I haven’t been able to get back into remission since before the isolated limb perfusion treatment in November 2012. Knowing I still had cancer cells floating around and popping up in my right leg made me feel like a sitting duck, just waiting to learn which organ was the eventual casualty. Well, my PET scan and oncology appointment on March 4th showed two new tumors in my right lung and more in my right leg. Luckily, the tumors are still small are treatable. So, in quick succession, I’ve signed up for a clinical trial, had a lung biopsy, echo cardiogram, pulmonary function test, and brain MRI. This Tuesday I’m scheduled to get a Hohn port, then lab work, then a return oncology visit to learn if I’ve been accepted into the clinical trial. It won’t make much of a difference since I’ll get the same treatment either way. If a bed is available, I’ll get admitted right away to begin treatment Tuesday night. Otherwise, I’ll either hang around or go home for a few hours till they have a bed ready for me in the cancer wing at Hershey Medical Center.

The treatment is High Dose Interleukin-2 (HD IL-2) and Temozolomide (TMZ). I have to be admitted to the hospital for Course 1 – Cycle 1 of the HD IL-2 treatment. I’ll be given as many doses of HD IL-2 (up to a maximum of 14) at 8 hour intervals (by IV), and will be discharged when the acute side effects have subsided. I’ll get Zofran and Compazine as needed. Then I’ll be reassessed around Day 10 after discharge and will be readmitted for Course 1- Cycle 2 of the same HD IL-2 treatment. On the 28th day after discharge from the 2nd cycle I’ll start TMZ for 21 days (this is a pill).

I’ll be reassessed again after the end of the complete course, and the response will determine what happens next. If I have progressive disease, I’ll stop the treatment and be observed. If I have complete remission or stable disease, I will receive another complete course of treatment and then be observed. If I have stable disease after the second course, I will go off the study treatment. If I have a partial or minor response, I can continue the treatment up to a maximum of 4 courses.

Everyone wants to know about the side effects of the drug and, believe me, so do I! Side effects may be mild or serious, and the health team will be monitoring me to give me medicines to help lessen any side effects. I’m calling it my Lenten diet! I expect to feel as though I have the flu with loss of appetite and weight loss. Since both treatments say hair loss likely, I’m expecting that too. I remember what I felt like during the intensive interferon treatment in 2008, and I expect this to be a bit worse since it’s given every 8 hours. But I’ll be in the hospital, so I know they’ll keep me as comfortable as possible.

Assuming I’m able to handle all 14 doses of the HD IL-2 this week, I’ll have 1 dose Tuesday night, 3 on Wednesday, 3 on Thursday, 3 on Friday, 3 on Saturday, and 1 on Sunday. I guess I might be home on Monday or Tuesday of next week? Then I’ll get about 10 days off and, hopefully, get to do it all over again.

I ready! I’ve been through a lot with this cancer battle, and I know how to get through it. I’m more worried about my family than I am about me. I’ll be fine. I’ve got a strong support system – after two battles already, you learn on whom you can count to be there in the good and the bad times. You also learn what being a friend really means.

I’m looking forward to Spring when I get home, and even planted pansies in planters on our front porch so they’ll be there to greet me in a week. I know in a week’s time we’ll have fewer cold days, the days will be longer, the grass will be greener, the bulbs will be higher, and I will have survived Course 1 – Cycle 1! Please send your prayers, good thoughts, and positive mojo as I believe in their collective power! I’m going to kick cancer’s butt this time!!