Phew...it has been awhile since my last update. The old saying goes, "No news is good news."
I had two weeks were I didn't have any appointments so I just stayed home mostly and focused on all the home therapies I am doing. There's a lot and some of them are an hour long and I need to do them twice a day. So, it is very time consuming. Devin and I keep researching about neuropathy and finding new things to try. We figure why not give it a try. The worst that can happen is it won't work.
Devin reached out to a colleague of ours when we heard he was getting great results with patients who have neuropathy. Devin talked to him several times and we decided to give it a try. The program is called Blueprint to Neuropathy. It is a 90 day program that can mostly be done from home. It consists of nutritional shakes, clean eating and two therapies. The Anodyne which stimulates blood flow and the ReBuilder which stimulates nerve regrowth.
I've been doing this for 10 days now and I have to say that along with the other things I have been doing I have started to get feeling back in my heels and the middle part of my feet. This is huge because it means I can walk better and I am using less energy to walk. So I'm not as tired by the end of the day. I might still be wobbly at times while walking but I feel confident that we will reverse the damage done by the chemotherapy.
I know several of you have asked what all I am doing for therapies and nutrition. I will be putting together a list of everything in a different blog post, so stay tuned. Let's just say there are so many that I have to set reminders on my phone to remember to do or take things at certain times of the day. Lol! My brain isn't as good at remembering as it used to be. I'm working on that too!
Thank you to those of you who were praying for me on Monday, October 9th. I felt your prayers and because of that and a little help from some Valium I made it through my two MRI's. They scanned my lower back and pelvis.
On Tuesday, October 10th we met with Dr Patt (orthopedist) to discuss my results and my options moving forward. He went over the results of the Nerve Conduction Velocity Test and the two MRI's. The NCVT showed decreased nerve activity in both legs but more so on the left. The MRI's showed a large disc herniation at L4/L5 and a smaller one at L5/S1. He discussed how the radiation I had at the beginning weakened the bones and the metastasis that was in the bones and now healed have left some major holes in my bones which is allowing the discs to move into areas they aren't suppose to be in. Which is causing me significant pain when I am walking/standing.
For treatments we talked about doing a series of injections called a spinal block at L4. This will make it so hopefully I won't be able to feel pain in my legs when walking. He also discussed doing surgery to fuse L4/L5/S1 to hopefully stabilize the area. He gave me a 50-50 chance of feeling better and healing properly. It seems that my body has really taken a hit from all the radiation and 4 types of chemotherapy. He did talk to us about how 1/2 of all disc herniations might heal themselves within a years time. With this information we all felt that at this time my best option is to try the nerve block. It is scheduled for after Thanksgiving. That was the earliest time they had available. I am on a waitlist for an earlier opening. In the meantime I will continue to build my body back up both nutritionally and with therapies.
I have been off of Prednisone now for the last 5 days and my sleep schedule is slowly returning back to normal. However, this is also causing me to have more pain in my legs and low back. I am managing it with some over the counter creams as best I can and resting when it gets too bad.
I go this coming Tuesday, October 17th to get my blood drawn. meet with Dr Brown (oncologist) and get started with my Keytruda infusions again. At least I am anticipating the infusion since the MRI ruled out that this was caused by a neuritis from Keytruda.
Prayers:
- Continued healing for Devin's torn tendon. He seems to be healing well and has started PT.
- For me as I get started on Keytruda again. That my body will be able to use it to keep the cancer away and that I won't get any of the side effects from it.
Pic of me doing one of my therapies. Notice my hair is coming back in slowly!
Continued thanks for all who pray for us!
Just a little update as we wait for my upcoming appointments and tests.
I was supposed to have my Nerve Conduction Velocity Test last week but they called me the morning of and said I was only scheduled for a consult. The doctor had read my file and said there wasn't a need for me to come that day and instead he went ahead and just scheduled the test. It is scheduled for October 17th but I am listed on the cancelation list if something opens up sooner. Fingers crossed because I am supposed to meet with Dr Patt (orthopedist) on October 10th to go over all my results and formulate our game plan.
Overall, I am doing pretty well. Energy levels are increasing and I seem to be getting more stamina. I get easily tired and have more left leg pain as the day goes on. The sharp sciatic pain comes and goes throughout the day. I have noticed that as we drop down in Prednisone dose my leg pain increases also. Not sure what Dr Brown will do with this information but I see her on Tuesday for a followup.
The Prednisone continues to keep me up at night. I'm averaging 6 - 7 hours of sleep but I really like to get 9 - 10. I am getting a lot of books read so that is nice. I hadn't read much over the past few years and I am reminded how much I enjoy it.
Update on Devin. His tendon appears to be healing as he doesn't need to wear the boot anymore. He either tapes it or wears a support stocking. So praise God for this blessing!
Prayers:
- That I might get in earlier than Oct. 17th for my Nerve Conduction Velocity Test
- That Dr Brown won't increase my Prednisone prescription again on Tuesday. I want to start sleeping better and losing the water weight I have gained.
- That Devin's tendon will continue to heal
Pic: One of the many areas we laser each and every day! These treatments have helped me so much.
Thank you for your continued prayers. We really do appreciate it!
So here are all the updates I have.
Devin had his MRI on Saturday. He has a partially torn Soleus tendon (it's one of the calf muscles). They are referring him to physical therapy and it should be healed in 3-4 months.
I had 4 appointments on Tuesday. . Endocrinologist (Dr Sudhakar) - she looked over my labs and my thyroid looks good as long as I continue taking Levothyroxine. She set me up for a followup in 6 months.
Then I saw my orthopedist (Dr Patt) - He took a few sets of pelvic and lumbar x-rays. He watched me walk and we talked about the tingling/numbness I have in my left leg. We also talked about the foot drop I am experiencing. The prednisone I was put on for it by my oncologist (Dr Brown) has helped some but not fully. He is referring me for a lumbar and pelvic MRI. It is scheduled for early October. He is also referring me to get a nerve conductivity test of both my legs so they can make a comparison. That is scheduled for next week. I will follow up with him after both tests are done.
Next up was routine labs. All my labs looked good!
Lastly, we saw my oncologist (Dr Brown). We discussed my prior appointments that day. We talked about how the prednisone was working some but not fully. As it turns out I did better with the left leg nerve pain when I was on higher doses of the prednisone. The symptoms started to come back as we weaned down the dose. So, she put me back on 40mg per day of prednisone. I will take that for the next week and then halve it the next week. Because there is a chance that this is a side effect of Keytruda my immunotherapy drug we decided to cancel my infusions at this time until all testing is done. Apparently Keytruda can cause neuritis. I will see her in 2 weeks for a follow up. She also referred me for a neurology workup but that isnt scheduled until right before Thanksgiving.
I had to return to the lab after I saw Dr Brown because she ordered a special test that gets sent out called Signatera. It checks my blood to see if any cancer cells are still floating around in it. I am not sure when I will get the results of this back. She said she would feel better about holding the Keytruda infusions if my blood was clear. I feel the same way!
Yesterday ( Wednesday) I saw my palliative care team. It is usually Dr Kadakia but last time and yesterday I saw his 2nd in command Anna Catherine Morris, PA. She is really nice and in my opinion just as knowledgeable as Dr Kadakia. We discussed all my appointments from the day before and we talked at length about my left leg. She decided to double my prescription for gabapentin. I will now be taking it morning and night. We will see if this helps with the nerve pain until we get this all figured out.
Prayers:
- That between the prednisone and gabapentin I can continue to get relief from the nerve pain and be able to do things around the house. I've been doing some purging and organizing.
- That Devin's tendon would heal fully.
- That my tests would reveal what is going on in my body so we can treat it and get back to fighting the cancer. Remember that Dr. Brown initially said this would be a two year fight with infusions.
My next Keytruda infusion is on Wednesday September 13th.
Since my last update I have been focusing on gently detoxing and getting back into taking my supplements that I was told to stop while I was doing chemotherapy due to possible interactions. Dr Brown (oncologist) gave me the go ahead to resume while I do immunotherapy.
Here is a list of what I do on a daily basis. I will expand upon them in the coming weeks since I get asked a lot about what I am doing.
Therapies -
- vibration plate
- lymphatic drainage cream
- laser treatments to my leg, feet and brain
- liver and thyroid castor oil packs
Nutrition -
- H2 Boost Molecular Hydrogen
- Oola AM (Mind) & PM (Body) multivitamin
- Lysosomal Glutathione
- Regenerate stem cells
- Various homeopathic sprays for bone and nerve regeneration
I am happy to report that I feel like I am getting some feeling back in my heels! I am praising God for this as my oncologist said I probably wouldn't be able to improve the tingling and numbness. Since I have just recently within the last two weeks started adding these additional items I am very hopeful that it will continue to get better with time.
Prayers:
- For sleep. Still having troubles due to the steroids. I have ordered some organic tart cherry juice that hopefully will help.
- For my upcoming appointments next week with ALL my doctors. We will be forming our game plan moving forward.
- For Devin. He is scheduled for an MRI on his left ankle/lower leg on Saturday.
Pic: Some of the additional homeopathic sprays I've added into my routine.
Thank you to all my faithful prayer warriors! I am so blessed to be covered by so many prayers.
Wow, I can't believe its been 20 days since my last update. Sorry about that but there wasn't much to report until this week. I've just been busy trying to enjoy the last of summer. School starts Monday for us.
So, about a week ago I started to notice some additional pain and neurologic symptoms in my left leg. It has made it very difficult to walk and I had to start using a cane. Some of the symptoms were sciatic pain, inability to even lift my leg out of my shoe with out assistance, tingling/numbness on the outer portion of the lower leg, inability to lift my toes off the floor and some slight swelling. This made it very difficult to walk as sometimes I would catch my toes on the floor. I decided that it didn't warrant an ER visit since I was going to see my oncologist 5 days later.
Tuesday, August 22, 2023
We saw Dr Brown(oncologist) after my routine blood draw in the lab. She reviewed my bloodwork and everything looked real good. I explained my symptoms that were going on with my leg. She asked me a lot of questions and I showed her my limitations I was having. She explained that Keytruda (immunotherapy drug) can have a side effect of neuritis. Which is inflammation putting pressure on nerves to decrease their function. She said they can come and go and can attack anywhere in the body. I was supposed to have my next infusion the next day (Wednesday). She made the decision to cancel the infusion and start me on high dose steroids for the next 6 weeks. She said that we should know by Monday if the steroids will help with what is going on in my leg. I am happy to say that I have gotten some reprieve in the last three days. The pain is less, swelling is coming down and I can move my toes a bit better.
Friday, August 25, 2023
My PET/CT showed NO EVIDENCE OF DISEASE for a second time! I am PRAISING GOD for this!!!!! I will be honest with you. I was a bit worried that maybe the cancer had come back in my sacrum or pelvis and was causing the leg issues. So that was a huge relief for me to read the report. I know I had a lot of people praying for this and I can't thank you enough.
I'm not sure what this means moving forward for my treatment plan. I do see in my portal that I am set up for my next Keytruda infusion on September 13th. I will be touching base with Dr Brown on Monday to tell her about how I am doing with my leg and discuss the plans moving forward.
Prayers:
- That the steroids continue to work and resolve all my leg issues 100%.
- For sleep. The steroids have been messing with my sleep the last two nights. A common side effect I am told.
- For my doctors to be able to make a good game plan as far as my treatment plan moving forward. We want to keep the cancer gone and keep my symptoms at a minimum.
- Devin - yes he needs prayers again. About five weeks ago he woke up and his left ankle hurt so much he hobbled around for a few days. It helped when he used sports tape to tape it up. He finally got in to see an orthopedist yesterday. They did an x-ray and exam. They will be setting him up for an MRI. Meanwhile he is in a walking boot until then.
Pic: A YUMMY rootbeer float to celebrate my PET scan results!
Last Tuesday 8/2 we had a meeting with Dr Brown (oncologist) after some routine bloodwork. My bloodwork was all good. We talked about how to keep my white blood cells up while continuing my infusions. The plan was to get an injection 24 hours after my chemo infusion to help stimulate white blood cell production. This would hopefully keep me out of the hospital with Febrile Neutropenia. We then talked about how in the last 3 weeks the neuropathy in my feet has gotten even worse. The complete bottoms of my feet are now numb/tingly. It is making it extremely difficult to walk as I can't feel my feet. With this new information we decided to discontinue the last two chemotherapy drugs that I was on. This also means that I don't need the injection for the white blood cells.
So, what does this mean? Moving forward for the time being I will only be receiving Keytruda the immunotherapy drug every three weeks. A new PET/CT scan is scheduled for the end of the month. If you remember the last PET/CT showed no evidence of disease. We are praying this remains the same.
On Wednesday 8/3 I saw Dr Kadakia (palliative care). We discussed how every time I am hospitalized I lose strength in my legs. Which makes it even harder to walk. I will be trying to regain some leg strength at home and we will discuss starting physical therapy in 6 weeks when I see him again. He stated that once people are off chemo some will reverse the neuropathy in 2 months - 2 years. This gives me some hope, as others have told me it will most likely be irreversible. Time will tell. Fingers crossed!
Prayers:
- For some good healing sleep so I can start to rehab my legs. My legs just feel like jelly most of the time.
- For the neuropathy in my feet to reverse.
- For a no evidence of disease PET/CT at the end of the month.
Pic: Just a great reminder to myself that my struggle is a sign that God is up to something great in my life!
