So what do you get when you have had cancer for two years, a round of radiation to you arm, Revlimid for nine cycles, a stem cell transplant, bone infection, eight weeks of antibiotics, a soft tissue mass in your eye socket, full cranium radiation, and finally four rounds of Velcade? Yes a bald head! But there's a bonus too....
Thursday, we went to OKC to visit with Dr Selby, hematologist and SCT doctor. We met with his PA first for her to gather all of the information on Stevan. The typical, aches, pains, symptoms, sleep patterns, nauseous, and medicines. Good news, his M-spike in January was a .6 and when we last saw Dr Selby at the end of February, it was .3. Yeah it dropped! They took more blood today to see what it is now, three weeks after the last dose of Velcade.
Stevan has been sleeping a LOT more over the last three weeks too. They think because he's not taking his Devil Dex (Dexamethasone), which gives him energy and does keep him up for a few days after his once a week dose. He's also been nauseous after eating most meals. Yes, he has nausea medicine but he won't take it unless I make him. He usually eats lunch with friends during the week which then makes his stomach upset. Then at night he doesn't want to eat anything because his stomach doesn't feel good. He'll resort to eating three to six oranges for dinner. Apparently the acid from the oranges doesn't hurt his stomach but settles it. Selby want to put him an enzyme that his pancreas might not be producing, which is why he could still be having diarrhea. They were going to give us some samples to try before getting a script to check it OU and see if it works, but we forgot to get them before we left. I spoke with the nurse on Friday, and they are going to mail him some to try.
Stevan has been experiencing some sharp pain in his head, behind his left eye, where the mass was and where they did radiation. They think this is just from the radiation, but they want to do an MRI of his head to see what's going on. They will try to schedule that in a couple of weeks and have a follow up appointment with Selby to discuss lab results and future treatment options.
Stevan's been having some pain in his lower left leg when he's sitting in his chair or in bed. Selby wants to order an image of his leg to check and make sure it's not Myeloma causing problems. Other possible causes is peripheral neuropathy or restless leg syndrome. There is no swelling so that's a positive note. By the time we got his blood drawn and headed to radiology, it was well after 5:30pm and they were closed for the day. So when I called Friday morning to see what that means. They decided to send him to Paris Imaging Center to get the X-ray done, so they can have the results when we go see Selby again.
So to answer the original question... Thursday early morning, Stevan said that he brushed off what he thought was a spider crawling on his face then his arm. When he got up, he told me that he thought it had bit him on his right side about six inches or so below his under arm. I didn't pay much attention to it but told him to ask Selby. At the end of his exam and visit, Stevan brought up the bite. Selby looked at it and asked, if he had had the chicken pox. Stevan said no he didn't. Selby said, I bet you did but you didn't know it. So be checked the computer to see what some test they had performed before his stem cell transplant that measured his antibodies. (I got to say how cool is that they can test to see what disease or illness you have been exposed to just by looking at your blood. I never knew this existed! Cool!) Sure enough, Stevan had been exposed to the chicken pox, had a marker of 2.8. Selby then told him, "it looks like you have shingles". With all that Stevan has gone through, even though he says he feels fine on some days, his immune system is extremely compromised and weakened. So after this last round of Velcade, we stopped his Dex and his Acyclovir which was 400 mg twice a day. The acyclovir is what prevents viruses. So now Stevan is back on acyclovir not twice a day but five times a day for seven days then back to his regular dose. They went ahead and took bacteria and viral scrapes for cultures to make sure. We asked Selby what this would mean for Stevan. He said it is quite common for cancer patience to get shingles and with him getting it at a young age, he probably won't have as hard of a time with it. We can only hope and pray.
God will get us through this speed bump. He does have the whole world in his hands.
I always read your blog because I am also a caregiver. My husband was diagnosed with Multiple Myeloma in January of 2012. Although he has not had shingles, I have had them twice in my life, so I know what it's like. I am praying for your husband. I hope all goes well with him, he has been through a lot. Please keep us updated.
ReplyDeleteMichelle,
ReplyDeleteThank you for the update. You and Stevan continue to be in my prayers. Cheryl
When I went off my acyclovir for a week before I my stem cell transplant last year, I had a major herpes simplex flair up. My whole mouth was in pain. Now I still take 800mg twice a day.
ReplyDeleteMeant to say that I still take 800mg of acyclovir twice a day.
ReplyDeleteThank you for your prayer, thoughts and comments. His red spot is healing up and looking much better. He didn't feel good yesterday and had slept most of the day Saturday and Sunday afternoon. A call from Dr Selby's PA yesterday let us know that his proteins numbers are down but he talked to her so I don't know the details. Hopefully I can find out more in the next day or so.
ReplyDeleteHi Michelle, I was just checking a few of your posts and had a quick question about your blog. I was hoping you could email me back when you get the chance -emilywalsh688 (at) gmail.com- Thanks : )
ReplyDeleteEmmy