Need input

[CarolineC]

Hi Everyone,
I need some feedback. In the summer I was having issues adjusting to the new zopiclone I was given by my local pharmacy and had been having discomfort in my chest area, right shoulder blade, and dizziness and confusion. We had a very hot summer and I couldn’t go out in the heat-mainly 8 am or 4pm for a walk. I posted in another thread about getting off zopiclone and feeling better and after 7 years I am completely off it.

On Aug. 19 I had a Herceptin treatment and 10 days later had my first Pamidronate infustion (didn’t think I was metabolizing Clodronate, an oral bisphosphonate I was taking for almost 2 years, because I have a slow-processing gallbladder). I showed up thinking the infusion would be over 3 hours but “protocol is one hour” and after some pleading, the nurse gave it to me over 1 1/1 hours. I felt fine that day, but the next day I felt like I had been hit by a truck and felt very anxious (I hate when I have to use that word), holding my breath, and nauseated. The night after I had nightsweats/fever. A few days later I was on one couch laying down and I propped up to talk to my son who was sitting on another couch, and felt something weird in my back.

A few days after that my husband and I flew to Van (1 hour flight, or 8 hour drive) for a belated 30th anniversary trip to see the Eagles. (I know they don’t like the “the” in front of the name) We had an excellent time, staying in a great hotel that would offer afternoon tea with pastries, followed by appetizers in the afternoon and of course we had to partake. We even took bikes from the hotel, rode to Stanley Park and around the seawall (about 8 km) and half of a place called False Creek. I had a nap before the concert and after the concert we had a later dinner at about midnight. The next day we walked to Stanley Park and by the time we got there I was sweating uncontrollably and thought maybe it was the heat. We flew home and my husband pointed out something on his side of the plane and when I leaned over I felt that weirdness in my back again. By the time we got home I was really tired and bleery-eyed, almost like on chemo had been.

The next day I had a Herceptin and spent the next few days on the couch, tired, not anything new, because after a treatment I would generally feel tired. I started feeling better by the weekend (Sept 14, 15). My son’s birthday was on the 15th so I made him breakfast and went to another community to walk in the Terry Fox Run a cancer fundraiser. We showed up after everyone had left so I was walking fast to catch up and ran abit as well. After 5 km I was dripping sweat, went to the washroom to cool down, but wanted to go 5 km more. I made 3 km but had to stop because I was feeling pain in my back. That afternoon we had a party for my son and again I was really tired.

A few days later I was due for my bone/CT scan and drank the Gastrografin. (another thread called Contrast Dye explains that) After that I had shakiness and my eyes turned abit red. Then I posted about the results of that scan-mass on my adrenal gland is enlarged (didn’t even know I had a met, although I had asked months before if my onc could check with the radiologist to see if there was anything on the scans because my CEA had been rising and I was having some weird symptoms), and some spots on my lungs. What??????? The local onc recommended Xeloda, but things weren’t critical right now-critical to me, personally, but not cancer-wise.

On Sept 30 I had another Herceptin and dizziness that night. Then I got what seemed like a cold for a week and just when I was feeling better I had to have my scheduled echocardiogram. That was the Tuesday before our Thanksgiving. The Tues after I’m getting ready to go to Kelowna (a larger Cancer agency about 3 ½ hrs away where I had to move twice when I received radiation). My gp had I guess finally decided that maybe I wasn’t so fine when my CEA reached 24 and she sent me for a second opinion with another onc. I already had another onc there but she was away on a research sabbatical. I also made an appt with my rad onc. Anyway, the local onc’s nurse phoned before I was leaving to say my ejection fraction had gone from 60-65 to 50-55 and they were delaying my next Herceptin treatment until I could have a MUGA-so possibly 2-3 weeks. Thank God I have people in the various imaging departments who are excellent in accommodating me for anything, because the head of the radiology dept phoned later to tell me they could fit me in ASAP for the scan. Had I known before Thanksgiving, I could have had the scan before we left.

I have my appt with the new onc the next day and I really liked her. She suggested various chemo treatments-Afinitor/Aromasin without Herceptin, Xeloda, TDM1 and also suggested contacting my husband’s insurance provider to see what would be covered, because the BC Cancer Agency doesn’t fund some of them right now. Then I had my appt with the rad onc who didn’t even know what was going on (although I had sent a report to his office). I had seen him in Aug for the first time in a year and he assured me my sternal met was indolent-boy I’ll bet he was surprised. He had to leave for awhile because he had to import my scans and compare them. When he came back he said the adrenal whatever was invading the kidney and he thought the lung things were met deposits. I had spent time before we left printing out info and looking up clinical trials, so we discussed one in Van for SBRT. He did say that they could possibly save 75% of my kidney and he ordered cortisol testing and a 24 hour urine for a tumour on my adrenal gland. I had the same test almost 7 years ago and I have talked about my adrenal problem for quite awhile. I actually really like my rad onc because he has helped me at various times over the last 3 years.

So that’s up until mid Oct. I have my MUGA the next week and find out my report which is great-ejection fraction at 65%. Take it to the onc nurse by Fri because I want my Herceptin back and I’m 5 days overdue and am feeling achy and my bp is having problems. She says most likely by the end of the next week. At the beginning of the week she phones to tell me they can’t find the report from Kelowna from the other onc and that my Herceptin will be delayed until the local onc can go over it. I phone to Kelowna and talk to the release of information dept and the woman apologizes that the transcription dept is behind and will send the report ASAP. I am to have my appt with the local onc on Thurs followed by the Herceptin, but am phoned by the nurse on Thurs that they can’t find the reports and my appt and Herceptin will be moved to the Fri. which was Nov. 1. She had also told me previously that I would not be getting a loading dose (because I had asked). I phoned Roche Canada and an employee told me because I was one week over, that I should have a loading dose. I told her on the phone that I was getting pissed off that I was the one phoning Kelowna about the reports. I had a HUGE fight with a family member that day, partly because we were completely stressed from everything going on.

The next morning I phoned the pharmacy to see what my dose would be and was surprised that it would be 8mg/kg-the loading dose. I had my appt with the onc and then my Herceptin over one hour. Everyone was so nice that day. I had asked if they could slow the infusion because I have a hard time adjusting to a faster time, but the nurse said one hour even though I asked him to check. He went over to the book to check, not with the doctor who was just across the hall. That night I was kind of tired, but stayed up until midnight because one of my daughters came over, and my husband was helping our other daughter pack to move to Victoria. I thought to myself, I am going to be so tired tomorrow.

BUT………I got up the next day and felt GREAT!!!!!!! I had energy, nothing hurt and that lasted for at least 4 days, so I decided to have my TM’s checked. I normally get them done every three weeks before each H treatment. After the treatment that I had missed they had actually risen abit. I just found out the results two days ago-for some reason it took almost a week to get them. My CEA had been up to 24 (after chemo and rads last year it was at 2)and is now………6!!!!! That is the lowest it has been in a year. My 15-3 had been 6 after chemo and rads, went bouncing around to 12, then 18, down to 13-still within the range of normal-but is now 2!!!! It has never been that low. Ever. I hope I got the right report and not someone else's.

Soooo………if you’re still with me, and I appreciate if you are, I am wondering….I have an appt with the onc tomorrow morn because I want to ask for another loading dose. I don’t know what he’ll say. I had been reading Gina’s (Popp) posts a few months ago and I was thinking she’s brilliant. Her thinking of cancer of being canceretic much like a diabetic, makes a lot of sense, and now I’m wondering if I should have a higher dose like she did, to beat it back. I wish she were here for advice.

Some of you may have some insight into this, especially those of you on the boards for a long time. Can you help me? What do you think? I would love to be able to combat this with Herceptin instead of chemo, and I have known in my heart how important Herceptin is to me. I have never thought that patients become resistant to it-I think patients maybe need a higher dose for awhile. I just don’t know, though. I know Gina is no longer with us, but what did eventually happen to her? Her posts reflect that she did treat the cancer successfully with that method, although I know she did take longer breaks, recur, then treat again.

I should also add that my AST is the lowest in two years and the alk phos the lowest in one year. My UREA is finally not flagged high, just below the highest now. I said I wouldn’t be taking another Pamidronate and the Kelowna onc said since I had been on a bisphosphonate for two years and they were finding there could be adverse effects like fractures after that time period, I didn’t need to continue at this time. I also will not be drinking the Gastrografin and am trying to get my rad onc to order an MRI, but haven’t heard back.

I also keep in touch with my doctor at InspireHealth in Van who is amazing and so positive. I have consulted with a nutritionist there who has me on an adrenal diet, including adding a ¼ tsp of good quality sea salt to my food and drink over the day-I started that at the beginning of Oct and that had helped to regulate my blood pressure as well until I was overdue on my Herceptin, but my bp is pretty good again. My cortisol levels were good, haven’t heard about the 24 hour urine test. I am thinking that although I was drinking enough water through the day, I wasn’t getting enough salt, and adrenals love salt and water. (a topic of another thread) I also found info that if your electrolytes aren’t balanced, Gastrografin can cause bp problems and possibly hypothyroidism.
http://imaging.bracco.com/sites/brac..._oct._2011.pdf I was finding more hair in my brush for the last few months, after my May scan. My nutritionist says that if I can address the adrenals, the thyroid should follow.

Pamidronate-found info on something called glomerulosclerosis that I’m wondering happened to me after my infusion. Don’t know. I’m hoping that is what showed on my scan. Maybe I had so much happen in such a short period from Aug-Sep, that my adrenal was shocked. Maybe the lung thingies are from radiation which I had on that side.

What I do think is that now that I’m off the drugs that were bogging my kidneys and liver, maybe the Herceptin can do what it needs to do. I have consulted with a pharmacist who has said H is not metabolized by the liver or kidneys, but your body gets tired dealing with all the different drugs and scan material. I also will be consulting with a pharmacist at InspireHealth about the drugs I have been on, my vitamins, and future recommended drugs. I will be sending him the info on Gilbert’s Syndrome that I have- a supposedly benign condition I was diagnosed with 25 years ago, but is being hypothesized as being a new risk factor for breast cancer- and the enzyme/gene that is impaired called UGT and he has offered to see if I can metabolize them. I found info in a liver cancer book online that said because of the metaboIizing problem, to use extra caution when having Tamoxifen therapy, which is what I had been on when the cancer metastasized to my sternum. I am finally understanding that I have a huge metabolizing issue and am feeling it is related to the GS.

Anyway, if you’re still reading, thank you for your patience and I'm sorry this is so long! I have had a lot of stuff happening and I thought maybe if I gave more detail it might help you to help me.