Ray and I went to Mass General Thursday, June 18th. I had blood drawn from my port and we met with Dr. Zhu. I continued to have the mouth sores, pain when swallowing. I asked Dr. Zhu if it would be okay to reduce the trial drug dosage to help with the mouth sores. He reluctantly agreed. So instead of taking 125 mg, I’m taking 100 mg. Quite honestly, haven’t noticed any difference. I went to my PCP, Dr. Singh last Tuesday and he gave me a prescription for the Miracle Mouthwash but added an antibiotic and an antifungal. I’m taking that and the Nystatin, which also has an antifungal in it. I actually had more sores that came and went. I continue to have pain when I swallow, although it’s gotten a little better and have a sore on my lip. I’m hoping that when I have my off week, that starts Thursday, that I have a few days of no sores or pain.

My hair continues to thin. I went to my hairdresser last Tuesday and she cut it short. I like it. It’s still not noticeable to anyone that I’m losing hair, but I’m well aware of what comes out in the shower when I wash it, when I brush it. I’m getting used to the idea that I may lose it all, but thankful that it’s still not bad enough to have to shave it off.

Looking forward to the trip to Mass General on Thursday. It is CT scan day. Not that I’m looking forward to the milkshake I’ve got to drink beforehand, but can’t wait for the results. Feeling optimistic.

Had a great dinner and visit with my IPMS friends last night. It’s just great to get together with them and catch up on our lives and life at IPMS. Some things never change though . . .So thankful that I’m not working and don’t have that added stress in my life – I can’t imagine working through this. I’m very lucky that I don’t have to.
Ray and I are going to New Hampshire this weekend. There is a family reunion for his Mom’s side of the family. His sister Janet and husband Kevin are hosting it. They’ve been doing this for a few years now. Looking forward to seeing everyone.

Will update with the results of the CT scan as soon as I can. Not sure when I’m getting the results.
Thank you all for your love, support and prayers. You are my strength!!!!

On June 1st I called Mass General again. My throat was still bothering me. I decided to stop taking the binder drug as I believed it was causing my throat to feel swollen. Talked to a nurse and she agreed I should stay off the binder drug and she’d call the next day to see how I was doing. The next day it was pretty much the same. Continued to have pain when I tried to swallow. Her and I talked and came to the conclusion that I had thrush. She called in a prescription for a liquid drug, Nystatin, that I swish and swallow. Within a few days the sores at the back of my mouth were gone. A few more days and my throat was feeling better, but I continued with the Nystatin.

Went to Mass General June 4th. That was the beginning of Week 5 and a new cycle. I was given a new supply of the trial drug for the next 21 days. Met with Dr. Zhu, had blood taken and EKG. Bloodwork was good. We got home around 6:30 – 7:00 pm. Around 7:30 Dr. Zhu called. He called to tell me that my CA19-9 numbers were significantly lower. He told me my number was 36. Let me explain what this means. This number gives an idea of tumors growing or shrinking. When I was diagnosised last year my number was 198. When I finished up with Dr. Hong my number was 168 – this made sense as I had some shrinkage. I was off chemo for almost 8 weeks before I started the trial. My benchmark CA19-9 number was 242 before starting trial–again, made sense because I had a couple of new lesions. So for my CA19-9 number to be 36 was amazing. This indicates that the tumors have shrunk!!!! Yeah!!!!! We will really know what’s going on when I have a CT scan on June 25th.

Because I had the previous week off and stopped taking the binder drug, my phosphate level was down to 2.4. Dr. Zhu ended up emailing me during the week to tell me to stop taking the binder drug as he found out that I didn’t need to take it while off the clinical trial drug. So I began the trial drug again and began taking 800 mg of the binder drug. During that week my hair starts to thin. I was losing more hair than usual when I washed it. My mouth and sores were much better.

Went to Mass General on June 11th. Just blood draw and met with the APRN, Caroline. My oxygen level was 94 the previous week and 94 again. They want it to be 97 or higher. I had been at 96 most of the time. We decided that the coughing was more than likely from my asthma so I need to go see my PCP this week to increase the asthma medication I currently am on. My phosphate level was back up to 6.1. So now I’m taking 1200 mgs of binder drug. And, of course, my mouth sores started up again and the throat is irritated. Nothing is as bad as it was before, but feeling worse than it did last week. I continue taking the Nystatin and refilled the prescription today. I’m taking Advil to help with the discomfort. I’m also doing salt and warm water gargles. Hoping all this helps.

My hair is really thinning. A ton of hair came out in the shower last week and this week. I went to a speciality store this week with my sister Sharon and bought a cap/hat. When we were at MGH I bought another one. I called my hairdresser and she said she’ll cut my hair short on Tuesday and then we’ll take it from there. I will bring the 2 wigs I bought last year to her so she can style them for me. I need to start preparing for total hair loss. I’m hoping it doesn’t happen, but I’m thinking it will. Luckily I have thick hair and even though I’ve lost a lot of hair, it is not noticeable to anyone. But if I just run my hand through my hair I come up with a hand full of hair! YUCCK! I’m not ready for this, but I’m working on it.

It’s crazy how many other medications I’m on now just to tolerate this trial drug and the binder drug, but in the end it may be worth it. Again, looking forward to the CT scan coming up in a couple of weeks. That will tell us what’s really going on and how well the drug is working.

I’ve been pretty busy as my energy level continues to be good. I made the cushion for the bench on the porch, I covered the footstool and made one pillow. I just have one more pillow to finish and I’ll be done with that project.

The kitchen and porch are completely finished. I will post pictures soon. I haven’t taken any pictures of the kitchen since the walls were painted – there’s actually just a small amount of wall that doesn’t have a cabinet or appliance on it. I bought a couple of dresses – one for Jay & Heather’s wedding and one for Kelly & Ryan’s wedding. Got a great deal on both at J C Penney. Went to the bridal shower for Kelly last week. It was very nice – great food, good company and some fun games. Went to graduation party for Gabrielle yesterday. It was very nice also-great food and company. Can’t believe she’s off to college in a few months!

Heather and I spent some time together today preparing labels for her to mail wedding invitations and made some inserts to put into the invitations. She’s hoping to mail them soon.

Thank you all for your continued support, love and prayers. You are my strength through this journey.

Had a busy week. Ray’s Aunt Helen passed away last week. We went to New Hampshire Wednesday (which was my Mom’s birthday) for the wake. We saw cousins that we hadn’t seen in a long time and spent some time with Ray’s Mom and sister Donna and husband Dave. Unfortunately, these are times when we get to see people and catch up even though its a time of sadness. She lived a good long life. May she rest in peace.

So Ray and I stayed at the Hampton Inn in Dover as we always do when we go to New Hampshire. We left for Boston on Thursday morning at 9:30 for my first appointment at 12 noon. I had blood drawn from my port. And then I met with Caroline, the APRN. I was still coughing, even though I was feeling better. My mouth was inflamed and it still hurt to swallow when I ate. I was having indigestion and nausea. They didn’t like my cough so they sent me for a chest xray. My phosphate level was up to 9.5 – just keeps climbing. The xray came back fine – no issues. I was told to use my inhaler as needed for coughing fits, wheezing, etc. And to continue taking 1600 mgs of binder with each meal. I had not used my inhaler for almost a year – I have this for my mild asthma. Was told to use the Lidocaine for the inflamed mouth and throat. I was given a prescription for Prilosec to help with the indigestion. It works very well. The indigestion is from the binder pill. This is my off week – not taking the clinical trial drug, so I was surprised I still had to take the phosphate binder. We got home around 4:30.

Friday I called Mass General for something else for my mouth pain. They returned my call several hours later. I heard about Miracle mouthwash from my sister Diane – it’s a combination of malox, benadryl and lidocaine. The straight lidocaine tasted so nasty that when I tried it, I threw up! So anyhow, they called in a prescription for Miracle mouthwash. Much better. I was also told to do warm water and salt gargles. These helped a lot. Within a few days the inflammation of my mouth was gone but I still continued to have pain when I swallowed – so every time I eat it hurts. Nothing is helping with the pain. I have 2 spots at the base of my tongue that hurt when I eat also.

Today I decided I’ve had it with having pain every time I eat. This has been happening since May 22nd and it’s getting very frustrating. I called Mass General at 9:15 this morning and left a message that I want to stop taking the binder med because I believe it’s causing the swelling in my throat, thus making it hard to swallow and giving me pain when I eat. It’s almost 2 pm and I haven’t gotten a call back yet. I already ate breakfast and ate lunch and DID NOT take the binder. I still had pain when I swallowed/ate. I’m assuming it’ll take some time for the swelling to go down. We’ll see what the next couple of days brings. Other than dealing with the pain when I eat and the irritation from eating, I’ve continued to have a good amount of energy allowing me to do many things. I’m back cooking dinner and taking care of cleaning the house and doing groceries.

I went to the fabric store the other day and bought material and foam filling to make a cushion for a bench that’s on the porch. I worked on that yesterday. I’m going to cover a small footstool we got from Ray’s parents house when his Mom moved out with the same material. I’ve got a couple of toss pillows that I’m going to cover too. Opened up the sewing machine yesterday for the first time in many years! Still working great – had this machine since I was 16 years old. Yes, that’s a long time!! I’ve decided to put a zipper in the cushion so I can remove it from the foam piece and wash it. Of course I didn’t buy one, so I’ll be headed back to the fabric store soon!

Thanks everyone for your prayers, love and support. You are my strength!!!!

Had a long day Thursday, May 21st. Left for Boston at 6:45 am and arrived home at 6:30 pm. I had an eye appointment at 9:45 am. Then I didn’t have a blood draw until 12:30. Eye examine went well. No problems with my eyes. We spent a little time in the courtyard at MGH and then we went back to the car and I took a nap! I’m fighting an upper respiratory infection, probably bronchitis, so I was wiped out from our walk to the eye office. Thankfully when we met with Dr. Zhu at 1:30 he faxed in a prescription for a Zpak and I’m feeling better.

My phosphate levels were up again. They are now 7.7. So I am now taking 1600 milligrams of the binder 3 times a day. I’m having a variety of side effects. Trying to figure out if they’re from the trial drug or the binder. My throat is swollen – not sure if that’s part of the respiratory infection or a side effect from the binder. It hurts to swallow sometimes. Dr. Zhu actually gave me a prescription for lidocaine, but I’m not using it as when I read the instructions, etc. it’ll numb my entire mouth. I may use it at some point, but not yet. I’m constipated. That is more than likely from the binder. I’m taking Senekot and having a Miralax cocktail. My mouth gets sore, but this comes and goes – this could be from trial drug. Things are tasting different, but not always. I have water tasting salty and non-spicy foods tasting spicy. I tried to eat an apple and there was no taste at all, so I couldn’t eat it. These could all be from the trial drug. But, I think the salty taste could be from the binder. Also my muscles get achy once in a while – that would be from the trial drug.

The good thing is that none of these things are constant. I’m taking Advil for the sore mouth and swollen throat. Some people that have been on the trial for a while have indicated that they had some of these symptoms in the beginning, but then they went away.

In spite of all this, my energy level is better than it has been, so I’ve been able to do a lot more things and that makes life so much better.

I’ve done very well on the phosphate diet paying attention to everything I eat and staying below 600 mg per day – except for the two cookouts this weekend! Because the trial drug doesn’t let my kidneys process the phosphate there seems no way to avoid the phosphate levels increase. Again, with other participants the same thing seems to be happening. All of them that I’ve interacted with have had their trial drug dosage reduced. We’ll see what this Thursday brings. It will also be the beginning of my off week.

We had a great time at Jay and Heather’s annual Memorial Day cookout/party on Saturday. Yesterday we went to my friend Julie’s cottage at Hawk’s Nest Beach for a cookout with her family and friends. Had a wonderful time. The weather was perfect for both cookouts, food was delicious and the company was awesome. Very good weekend!

I think most of you that read this blog already know our wonderful news, but for those of you that don’t – RAY AND I ARE GOING TO GRANDPARENTS!!!! WOO HOO!!!! WE ARE SO EXCITED! Heather and Jay told us the news on Mother’s Day. They are due January 7, 2016. Can’t wait to get my hands on that little bundle of joy. In the meantime, we pray for a beautiful, healthy baby.

Thank you all for your continued love, support and prayers. They are so appreciated. You are all my strength!

There are only 2 days left and I’ll have completed 2 weeks of the trial. We had a long day last Thursday. Same routine – take blood, have an EKG, meet with nurse, take pills, fast for 1 hour, then have lunch and return 2 hours after pills were taken and have more blood drawn and EKG.

May phosphate level increased to 6.3 from 3.2 the previous week. Because of this increase, they increased the amount of the phosphate binder. I was taking 800 milligrams with meals and now I’m taking 1200 milligrams with meals. One thing that started happening a few days after the increase was that some foods were tasting different – some were more spicy. A weird thing was that water began to taste very salty. That stinks because I drink water throughout the day, which is something they recommend. It seems to be saltier later in the day – after I’ve taken the 3 doses of the drug. So I’m trying to drink more water earlier in the day.

Trying my best to regulate phosphate levels, but it is a challenge. I ordered a book recommended by another person that is on the trial at M. D. Anderson in Houston, TX and received it Saturday. It’s like an encyclopedia! But it lists all kinds of foods and what vitamins, minerals, etc. it contains. I’ve gone through it and highlighted foods I normally eat or have begun eating because of the phosphate levels. I’m sure I’ll be highlighting more things as I continue with this trial.

So, not perfect, but better than being on chemo. One very wonderful thing is that I’ve had more energy so I can do stuff around the house, i.e., laundry, dishes, cooking, etc. I’ve actually been doing the grocery shopping for the last 3 weeks. I hadn’t been in a grocery store in 5 months or so. So this is good.

Had a wonderful Mother’s Day with a cookout at the Beacham’s. Jay and Heather gave me a beautiful bouquet of flowers and Julie sent me a gorgeous drop pearl necklace and Gharandelli chocolates! Good thing I got the chocolates early in the week as once I started the trial I couldn’t have chocolate anymore because it’s high in phosphates.

The porch is done and looking beautiful! I’m enjoying it immensely. I still need a few more pictures and a cushion for the bench, but it’s looking good.

Thank you everyone for your support! You are my strength in this journey!