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!!