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!

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!!

Documenting dressings, Beginning HBO

I was thinking about my nine+ years of treatment and the optimism I’ve carried all these years (most of the time). I named my first blog “The Intensive Interferon Experience” because I thought it was the only treatment I’d need to rid the cancer from my body. Granted, I was in remission for a short time after completing that treatment until I had a deep tissue massage. A tumor popped up on my leg less than two months later.

Changing oncology practices and with a new treatment prescribed for me, I started this new blog, once again believing that the Isolated Limb Perfusion would lead me to remission. It obviously didn’t, and I’m a bit wiser and a bit more grounded in reality with each new treatment.

Before I get to the dressing changes, I want to document the week. I had a wound specialist appointment on Tuesday where they photographed and measured the wound. It’s getting a little smaller. She did more debriding and confirmed that my tendon is running through the right side of the wound (she did some debriding there too!). I told her about the continued burning, and she doubled my Gabapentin (Neurontin) dose (take two 300mg capsules every 6 hours). She added a Mesault dressing (sodium chloride).

I saw my wound specialist again on Thursday. She was happy to see some granular tissue popping through and did more debriding. I need to add that before any debriding is done, lidocaine gel is applied and allowed to sit for a good period of time before she starts cutting. Because I have some reddened skin below the wound, she prescribed Cephalexin 500mg because it’s good for soft tissue infections. This could still be pseudomonas.

Also on Thursday I had my needle biopsy of the bulge on my left pectoralis muscle. Bill was allowed to stay in the room. The doctor did three cuts and I left with a bandaid covering the site. The results will come next week. I needed to be off warfarin for 5 days before the procedure and was instructed to begin the following evening.

At physical therapy Monday and Wednesday, I had dynamic tape applied to my weak left leg to help with foot drop and McConnell tape applied to my knee. I haven’t used my brace all week! On Wednesday, I walked .3 mile in 16 minutes with no brace.

I’ve been doing a lot of dressing changes lately, and I want to document them here in case I need to refer back to them later. So, here are the steps for Dressing #1, a wet-to-dry dressing: take a 4×4 gauze and completely unfold it and then fluff it into a ball – I swirl it into my left hand; place fluffed gauze into wound; place 2 4×4 gauze squares on top (I secured these with tape to prevent rubbing); place a combine dressing over that and secure with tape; place elastic stocking over all.

Dressing #2, still wet-to-dry, but with the addition of Dakins (bleach solution) to fight pseudomonas: wet a 4×4 with a few drops of Dakins; squeeze out any excess liquid; fluff and place on wound; place Adaptic dressing; place 2 4x4s; finish as usual. Since I was having SO much trouble with the gauze sticking at the same place where I have exposed nerves, the Adaptic dressing that has vaseline on it should help.

Dressing #3: Unfold Mesault (sodium chloride dressing); cut one of the squares into a circle to fit inside my wound; place Mesault dressing into wound; fluff one 4×4 and place on top; proceed as usual. I’m adding a little extra vaseline on one edge of the Adaptic to stop the little bit of sticking that’s still happening.

My skin is very red and irritated around the wound, so it was suggested to thinly apply Calmoseptine Ointment (available over-the-counter). I can’t tell if it’s helping yet.

This week I had hyperbaric oxygen therapy treatments (HBO) on Monday, Wednesday, and Friday. There was no doctor available Tuesday or Thursday so those treatments had to be cancelled. I wasn’t nervous to begin until I got there – what if I couldn’t pop my ears! The nurse calmed me down reassuring that they would stop the treatment if that happened (and send me to an ENT doc to have tubes placed in my ears!).

I needed to completely undress, including all jewelry, lotions, etc., and put on two cotton hospital gowns and foot coverings. Then I sat on a hospital gurney for the nurse to take my vital signs and the doctor to check my ears and lungs. Then I laid back and tried to get comfy enough for the next two hours. the nurse gave me a bottle of water in case I needed it to swallow and help pop my ears. She also gave me a mask so I could breathe “room air” for 10 minutes in the middle of treatment. She slipped a band around my arm and asked me to press a big silver button that told us whether I was grounded. My foot covers were slipped off, I was covered up, and asked what I wanted to watch – choices are Direct TV, a movie from their library or yours, or your music. Although I took in several CDs of music, the nurse recommended something more distracting for my first time. I decided on “My Best Friend’s Wedding.”  The gurney is raised, slid into the HBO chamber, the chamber is closed and secured. You can hear the air blowing in and the 10-minute dive begins.

I started popping my ears every other second, too worried to allow the pressure to build. Pop…pop…pop…pop…pop…I experimented with ways to pop my ears and became quite efficient. No pain!

After the dive I breathed100% oxygen for 45 minutes, then put the mask on for 10 minutes, then back to the oxygen for the last 45 minutes. It ended by bringing me back up from the dive which lasted 10 minutes and involved more popping of ears. Vital signs were taken – blood pressure goes up during treatment (I was at 177!) and lowers back down to your baseline within an hour after treatment. Then the doctor checks your ears and lungs again. That’s it! You can get dressed and leave.

Busy week to say the least! Next week I’ll have HBO M-F, a wound care visit, physical therapy, and an INR check. I should also learn the results of the needle biopsy.

Onward!

PET Scan Results & New Treatment

I’ve had lots of appointments in planning for healing my surgical wound, which they’re now calling a radiation wound since the radiation I had for the tumor back in July is the reason for the tissue damage and the reason it won’t heal.

I visited my family doctor (ended up being a physician’s assistant, but he was great!) for my left knee pain since it’s no better and is really impacting my mobility. After a thorough exam, he recommended an x-ray and prescribed additional physical therapy just for the knee and Meloxicam to reduce inflammation. The xray results: Findings: “There is mild narrowing of the medial joint compartment and tricompartmental marginal osteophyte formation. No joint effusion. No fracture. No lytic lesion.” Impression: “Moderate degenerative change of the left knee” I’ve already begun the physical therapy sessions to strengthen my quads, something I’ve been trying to do for months. I’m even going without my brace every other day to try to strengthen my ankle and knee. Next step will be to see an orthopedic doctor.

I had a consult at the Center for Wound Care at the Rehab Hospital for hyperbaric oxygen therapy (HBO). Apparently my wound is a perfect candidate for HBO since this kind of wound has the most success with that treatment. I needed a CT scan of my lungs and a current echocardiogram to be approved.  My echocardiogram was clear with little change from 3 years ago. My lungs were clear in the PET/CT scan I had yesterday. My wound care specialist prescribed Ciprofloxacin Hcl 500mg for 10 days to combat the pseudomonas infection. She also prescribed Neurontin (Gabapentin 300mg), starting me on the lowest dose for the nerve pain I have in my right lower leg.

I’m scheduled to begin HBO on Monday morning. I need to arrive 30 minutes prior to my treatment to prepare. That means changing into a 100% cotton gown. I’ll also be checked by a doctor for clear lungs, temperature, and blood pressure. Then the hospital bed is rolled into the chamber for treatment to start. First the pressure is increased gradually for 10 minutes as though I’m scuba diving 45 feet down (they call it a dive). I’ll need to pop my ears. Then I’ll breath 100% oxygen for 45 minutes. I get a 10 minute break by wearing a mask to breath “regular” air for 10 minutes to avoid oxygen toxicity. Then I’m back to the 100% oxygen for a final 45 minutes. The process is completed by decreasing the pressure over 10 minutes and I’ll need to pop my ears again. I’ll be checked by the doctor once more, and that’s it. There are a lot of things to avoid prior to each treatment: no lotions, makeup, hair products, deodorant, jewelry, perfume, etc. New nail polish needs to be applied the Friday before a Monday treatment so all fumes are dispersed. It’s very specific! I can watch Direct TV (no HGTV though), listen to music or watch movies with CDs I bring along, etc. I think I’d like to listen to books on CD. If anyone has any good ones, let me know. I need to visit my local libraries to check out their selections.

The HBO requires quite a time commitment! They have recommended 40 treatments (insurance approved 30). I will go 5 days a week (Monday-Friday) for 8 weeks, hopefully. Initially I may feel more energized and the therapy may even reduce my pain. We’re hanging a lot of hope on this!!

The PET scan was good overall. The only thing that needs to be investigated is a small bulge on my left pectoralis muscle. It’s suspected that it’s a result from my arm exercises, but we’re going to be cautious and check it out. I have a needle biopsy scheduled for next Thursday under local anesthesia to learn whether it’s melanoma or not. If it is melanoma, it will get radiated and I’ll be done with that. If it’s not melanoma, then I will have No Evidence of Disease (NED) for the first time in years!!! It would almost be a miracle!!! All fingers and toes crossed!

Pain management and exercise are at the top of my to do list. Thank goodness for my wonderful hubby – I could not do this without his constant support and love! He is my rock and, with him, we can do this!! I also greatly appreciate the encouragement I receive from my blog readers! There are days when it’s your motivational messages that keeps me going! Many thanks and love!!