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!

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!!

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!!

Ending one treatment and beginning another

It’s been quite a journey since I received my first pathology report of malignant melanoma back in December of 2007. I’ve had multiple surgeries including a sentinel lymph node mapping and biopsy and lymph node dissections, 19 treatments of intensive interferon, isolated limb perfusion at U Penn, 9 months of leukine shots, and finally high dose interleukine 2 (IL2) with temozolomide (TMZ). I made it through two courses of the IL2 and TMZ and was scheduled to be readmitted to the hospital for the third course to begin tonight. However, for the second scan in a row my disease is stable, and this treatment is too harsh to only get stable results. Stable is great because it means the cancer’s progression has been stopped, and Monday’s scan even showed that a tumor in my lung got a bit smaller and has less intensity (from black to gray on the printout). But it’s still not good enough to go through a third course. I feel as though I’m a bit too happy about not having to go through the third course, but it really was rough and I was quite stressed about having to go back into the hospital. It’s quite freeing to be sitting at the kitchen table with the screen door open right now!

The next step, which has been plan B for awhile, is to begin radiation on my leg and go through four infusions of ipilimumab (Yervoy). The infusions will be three weeks apart and will last about 90 minutes – all out-patient. That begins September 29th. I’ll know more about the radiation treatment and schedule after the consultation (still to be scheduled). Although the Yervoy has side effects, they’re all manageable and nothing like the IL2. It’s expected that I’ll be able to work through it all and feel good. I’ll get scanned about six weeks after the last infusion, so that would be sometime in January.

The oncologist explained the IL2 and TMZ as pressing the gas pedal down with the brake on. The Yervoy will release the brake. He has been administering Yervoy for about 3 1/2 years, and has seen Yervoy able to be more effective after a patient has gone through IL2. So I’m going into this treatment with an advantage. Add the radiation into that, and we expect to knock the cancer out! My volume of cancer remains small, so this is doable!!

We now have a new plan B and C, so if any cancer cells are left after this treatment, there are still more options. It’s nice to have options! My surgical oncologist told me that all I need to do is live long enough and the right drug will come along. Another new drug just received FDA approval last week (pembrolizumab – Keytruda), and the research continues for even more effective therapies.

Except for the IL2 treatments, I had a great summer and feel terrific. We feel immense gratitude for all the love and support we continue to receive – it makes ALL the difference! Thank you!!