Next step
 

Well, my Herceptin has been delayed for the second time because of low ejection fraction on my echo. I'm having a great debate right now because it looks like the cancer is in the adrenal gland and going into the kidney, but coincidentally I have had some bad reactions after a Pamidronate treatment and after having the oral and IV contrast that I think have "pissed off" my adrenal and shocked my kidney and that is what they're seeing on the scan. Also, coincidentally the contrast stuff can affect blood pressure, fluid levels and what do you think controls those? The adrenals. I have finally figured out that I've been getting more dehydrated after the scans and I have been getting worse and worse after each one, especially with blood pressure problems I already had. I felt better, only in the last few months, because on the recommendation of a nutritionist, I started having a 1/4 tsp good quality sea salt in my food and drink all day. My blood pressure started reading again and the lower back pain I'd been having for a year and a half (started after my first scan in May 2012) disappeared. Although I had been drinking water, I was dehydrated most likely because of electrolyte imbalance.

So I'm dehydrated and getting worse after each scan which dehydrates me more and I had also been on a bisphosphonate which you need to be well hydrated when taking. Usually I have a scan every 3-4 months and an echo every 3 months and the echos are not usually right after a CT scan-except for the last two. In Sept I had a scan, had red eyes and shakiness within a day, then an echo 3 weeks later and the heart function is down, so I'm taken off Herceptin. Two weeks after the echo and a day after I should have had Herceptin, I have a MUGA and my function is back up. In Jan I had a CT scan, had pressure headaches and radiating pain down my right arm within a day, and two weeks later the echo and heart function were down again. I requested another echo instead of a MUGA because I want the least amount of stress on my body and I don't want to be injected or radiated anymore for awhile. I had the echo on Tues, (3 weeks after the last echo) and my ejection fraction is back up and I'll have a reloading dose of Herceptin tomorrow. Thank God, because I've been really achy for over a week.

I have been on a vicious cycle of reacting to the scan solution affecting my adrenal which affects my blood pressure and affects my heart. I have seen a local cardiologist who said the bp can affect heartrate because I do want to make sure my heart is okay.

Tomorrow I'll be talking to my onc in the larger centre about what to do about the adrenal.I've talked to an endocrinologist (a nice doctor who I met last year in Van in a 20 min appt and who assured me I was fine) who says to take it out. I've talked to my rad onc-who I trust and like-and he's offered SBRT. Both of these options entail no more right adrenal gland. Yes, I can live with one adrenal but what will that be like? Someone in my in-person support group had his kidney and adrenal taken out after kidney cancer and then he got prostrate cancer and has diabetes and thyroid problems-the adrenal controls those as well.

I'm considering TDM1 but it's so new-only approved in Oct and not even covered yet, I'd have to go through my husband's insurance to get it. I'm sure they would give me the highest dose, being protocol (hate that word), and would that possibly give me lung inflammation which could then be seen as progression?

What I would really like is to have Herceptin weekly or at a higher dose. Why? Because when my treatment was delayed last fall I had a reloading dose when I restarted and I felt great for about a week and my TMs went right down. They rose again by the next treatment but a couple of points less. This gives me a clue that my body needs Herceptin in some capacity. There is no evidence to support weekly or higher doses so I'm out of luck. I believe, for me, that would be the least invasive option and I would basically keep on the same treatment. Afinitor/Aromasin has been mentioned but not approved with Herceptin.

Basically I guess I wait until tomorrow's doctor appointment to find out if there are new options. My main concern has been my family-my son is graduating in a few months and has also been through so much. I just want to make cookies (although my sternum still hurts so it's abit difficult to stir) and spend quality time with him, not reacting to scan stuff like I have been or adjusting to a new treatment right now.

It's expensive for me to have radiation elsewhere because locally it isn't available and I've already moved twice to another location at a cost of thousands of dollars to have radiation before. I will do what I have to, I guess, but I'd sure rather spend money on helping my kids out financially and being here for them.

Any suggestions would be appreciated. Thank you for reading.

Re: Next step
 

Hi Caroline. I am late responding to you, so I sent a private message too - hope you got it. As a fellow Canadian, I was interested in your comment re TDM1 (Roche calls this Kadcyla) and the private clinic issue.

Right now, no Canadian province covers TDM1, (at least that is my most recent info) but if your private insurance carrier covers it, you may still be able to get it in a hospital. I take pertuzamab (perjeta) which is not covered by my province but my health care plan pays for it. lucky lucky me. At first I too was told I would have to get my injections at a private clinic, BUT I worked with the "Roche Patient Assistance Program" in Canada, and they arranged with my private insurance company to have the drugs delivered to the hospital pharmacy and they bill by insurance carrier through some local pharmacy in Toronto (I think) - its weird and no one has actually explained the billing process to me, I just know it works.

I called Roche today, because they also sell TDM1 (they refer to it as kadcyla). Call this number 1-855-224-2233, and see what you have to do to get enrolled in their patient assistance program. Your doctor may have to complete a form too, but once you are in the program, a case worker will work with all parties to see that you get the drug, if you still want it.

Of course its called patient assistance, and they were great for me, but really, they just want to sell their drugs. That said, they do a lot of the leg work for you.

Here are some other websites that might be of interest to you - I don't know. The pan Canadian Oncology Drug Review (pcodr). This group reviews all new cancer drugs approved for sale in Canada and makes recommendations to the provinces on whether to cover these drugs (not all provinces do so at the same time, BUT are supposed to since we are supposed to have access to equal health care in Canada, regardless of the province in which you reside) and also the pan Canadian drug pricing alliance group - this organization is a compilation of various provinces that want to band together (so to speak) to purchase new drugs at volume discount prices.

I believe you (and all of us stage IVers ) will survive many long years yet .

sharon from pei

Re: Next step
 

Maybe you should ask about adding Tykerb to the mix.

In regard to the scans might you be allergic to the contrast? Do you take and pre-meds (eg. steroids and antihistimine) prior to scans?

Re: Next step
 

Thank you Sharon for your post. It has come at just the right time for me. I feel so alone in dealing with this mess.

Before my Herceptin was delayed I was hurting already and it got worse before it got any better. My upper back and ribs were hurting all the way around to the front and my stomach felt like it had been punched. After the reloading dose the stomach finally settled and a massage therapist was able to help my right side so mainly the pain was in my left shoulder with radiating pain to under my left arm. I was sleeping sitting up with a heating pad alot of the time and finally was using Motrin. I hate resorting to pain meds. I have spent the two weeks that my son had off for spring break sitting on the couch all day with the heating pad. I wanted to go to Hawaii but the delay in my Herceptin made my next treatment hit right in the middle of spring break. Turns out I wouldn't have been able to go anywhere anyway. At the least I wanted to go skiing for a day since I had been feeling good enough to do that and we live 5 minutes from a ski hill. I am so discouraged. All I have done is sit. I couldn't lay down until last night for the first time in 6 weeks and am wondering if that's because I had another Herceptin last Friday.

To top it off, the onc at the larger centre said they don't delay Herceptin treatments based on fluctuations in echos. So I'm in pain, now my TMs have risen as well, and I'm supposed to have an MRI on my adrenal next week. Before the first time my Herceptin was delayed my sternum was stable and the adrenal whatever was enlarging slowly and my CEA, although high, was fluctuating abit and my 15-3 was going up slowly, but still within the range of normal. After the second Herceptin delay I'm in pain and my CEA has risen as well as the 15-3.

I discussed changing my treatment to Aromasin for the time being because I have my son's grad coming up and I don't know how I would be on TDM1 or chemo. But apparently Aromasin can drive up the blood sugar. I have spoken with a pharmacist to see if I can even metabolize it, because with Gilbert's Syndrome I have an impairment of an enzyme. I haven't heard back from him and I decided not to start the Aromasin when I have other things going on and a scan coming up.

Sharon, thank you for all the information. I am so frustrated with trying to figure things out, but your information has helped. The larger centre onc has said that there is a clinic they send people to for treatment, and the local onc has said they can administer it in the hospital since it's not a Cancer Agency. All I know is I just want to have fun and I am having anything but. I see friends on Facebook inviting me to play games or talking about "fluff stuff" as I term it, without a care in the world.

I feel like I'm living in a parallel universe as a spectator watching other people live carefree while I spend my time trying to strategize and find information to help save my life. I'm sorry I'm such a downer. This is not the person I usually am-I am usually a glass half full and positive person who can see the beauty in things and appreciate my life. I think of my sister who passed away from MS 12 years ago and wasn't able to do many of the things that I can. I can walk, talk, feed and dress myself and go out for lunch with friends. She couldn't. It's just when I'm in pain it's scary.

Re: Next step
 

KK1, thanks for responding.

I asked about Tykerb and a woman on bco.org is on that with Herceptin for an adrenal met, but I can't have it because it isn't approved with Herceptin. The same goes for Afinitor/Aromasin, but not with Herceptin. In my signature I wrote that I was on Letrozole, but only for a few months before I started Docetaxel and Herceptin two years ago. When I was done the chemo the oncs said to hold off on an anti-estrogen for later, so I waited 7 months and was having pelvic cramps and my CEA was rising before I asked to be put back on Letrozole.

The contrast thing has been resolved. I won't be drinking it or getting IV either. Turns out the oral contrast can cause bp problems and fluid issues which I had been having after each scan. The adrenal controls bp and fluid. Hmmmm. Now I have an adrenal something. Also, if one is on a beta blocker there can be hypersensitivity to the dye. I am on a beta blocker. No one told me this. I found out the information after my fourth scan and looked up the oral contrast by brand name. Stupidly I drank the contrast and had the IV for the fifth scan and for the sixth one, in Jan, I had the IV only but maybe that causes problems as well. I have known that I've had an adrenal problem for a long time-7 years ago I was tested for an adrenal tumour. I guess if I don't have Addison's or Cushing's, then I don't have a problem....until they see it on a scan.

My options have been chemo, changing the estrogen therapy,or TDM1 or Pertuzumab through my husband's insurance. I have considered Xeloda but have read this http://her2support.org/vbulletin/sho...=xeloda+enzyme and this http://her2support.org/vbulletin/sho...=xeloda+enzyme. With my extremely sensitive system and obvious metabolizing problem, I'm really leery of just trying anything. I suppose I'll talk to a pharmacist about Xeloda as well at some point. I would really like to keep to a targeted therapy, but wanted to wait a long time before that would become necessary. I am also looking into complementary therapies. I know a woman who had numerous liver mets 7 years ago and through supplementation and a whey protein, she has no evidence of cancer. I actually used it abit a few months ago and my WBC and neutrophils went up slightly and my CEA went down slightly. I stopped because I didn't know if it would be safe for my kidneys and my body isn't used to dairy.

I have consulted with a naturopathic onc (more like integrative) and he brought up studies of low dose aspirin, Metformin, ketogenic diet. We discussed mTor and ALK inhibitors, exercise, vitamin D-I just have to find the right things for me and not have anymore Herceptin delays. Whatever I do, Herceptin needs to be part of the treatment in some capacity. My doctor at InspireHealth has helped me with helping my adrenal-thank goodness for her. I also believe that the beta blockers have helped. News and Lani have posted on studies being done on them, because they address the adrenaline receptor.