Decisions, decisions

[CarolineC]

Hi everyone,
So….I have some decisions to make. I had my second opinion visits the week before last and a lot has happened. My husband and I travelled to the next largest cancer centre which is 3 ½ hours from home. I had a consultation with a radiation oncologist who suggested 20 treatments (I thought he would say 5) and a biopsy of my sternum. That was a Tues. Wed I had a CT scan to be mapped out for rads, Thurs I had a CT guided sternum biopsy and Fri. an appointment with the oncologist.Then I came home and had four business days to get ready to move to the city and by the time I got here I had a bad cold (the first one in almost two years) and felt like I was being punched in the sternum every time I sneezed as well as having some flexed ribs from the force so it’s very painful to lay back on the table for rads. Not a good time, that’s for sure. I have been very down; not a good way to start treatment.
This time around I feel like my body is stronger than the first time but my mind is having a hard time wrapping around the whole situation. Everything is switched from the first time ; I’m having anti-hormone therapy, rads, possibly chemo and Herceptin. Oh yeah, my biopsy showed I’m still ER+, PR+,HER2+. I couldn’t believe I was asking people to pray for one, that it was breast cancer (because there was a small chance it could have been another kind of cancer) and two, that it was HER2+. I believe that the original cancer either wasn’t taken care of by rads because it’s maybe only 2 inches from the original tumour, or that I was resistant to the Tamoxifen, couldn’t metabolize it, or it fuelled the HER2 as soon as I finished the Herceptin. I had read information about the CYP2D6 test to see if I could metabolize Tamoxifen and had asked to be tested last year but was told it wasn’t being done; now I notice Vancouver is having a clinical trial for it. I don’t know when the cancer spread because I had not had any scans and was only seeing the oncologist every 3 mths with bloodwork. I knew that tumour markers were not a diagnostic tool and my onc said he didn’t use them but I found out someone in my support group with the same kind and stage of cancer was having TM’s so I requested that I have them. In March my CEA was 2,(normal was 0-5) 15-3 was 6,(normal was 0-32) by May the CEA was 4 and the 15-3 was 7, not bad I thought. I questioned the doubling of the CEA and the onc said it was within the range of normal and he wasn’t worried. I said “if you’re not worried, then I’m not worried”. Now he’s looking at the markers because the CEA is 25 and the 15-3 is 40.
I had asked to have an extra year of Herceptin before I finished but was told it wasn’t protocol. Okay, I understand. I had asked for tumor markers and was told they didn’t go by them. I understand, in a way. When I asked for a bone scan the onc office never got back to me and by the time they did the nurse said the onc didn’t think I needed one (they thought I had costal condritis) so he wouldn’t put in a requisition. I said “that’s okay, my gp ordered one and I’m going tomorrow”. I’m so glad I persisted for the bone scan because now after having a CT with contrast the sternum seems to be the only place it is (well, I am having a head MRI tomorrow morn and I pray to God it will be okay).
I have talked with the oncologist over here before I had the biopsy and we discussed rads, possibly chemo and Herceptin, with no anti-hormone therapy . I said I would go through chemo again because even though it’s not showing anywhere else doesn’t mean it isn’t setting up shop. She suggested Docetaxel every 3 weeks for 6 cycles because it is a different agent than the Paclitaxel I had before. She was away for a week but hopefully I’ll be able to see her this week.
Do you have any suggestions? I don’t know anyone in my area who has gone through this and I want to make the right decisions. I know Herceptin is in my future; should I have the chemo as well? Is anyone on letrozole and a bone builder and Herceptin? When should I go on Herceptin? Now, while I’m having rads, or later? I feel uncomfortable that the HER2 is going unchecked. Unfortunately I had my port removed in May and now I’ll have to get it reinserted. I hate that my family is getting dragged through this again and I want to do as much as I can.
I do feel very blessed that my sister is coming from Ontario (I’m in British Columbia) to stay with me for 3 weeks and my other two sisters will join us for a weekend; we haven’t been together for 4 ½ years. I also have a great support network of friends and family that are so concerned about me. I hope I’m making sense; I’m very tired.
Caroline

[tricia keegan]

Hi Caroline,

I'm sorry you're dealing with this a second time, I did herceptin when my chemo was finished but rads were ongoing and was fine.
I also am highly triple positive like you so decided early on to have an ooph and take arimidex and my onc agreed, I'm into my sixth year on it now and have no regrets.
I also was treated with Adriamycin and for me, it was tougher than a Taxane but was glad at the time they treated it aggressively and obviously its worked so far, we're all different and you may find it easier to tolerate but I was reading some newer studies showing due to the risk to the heart this was not the preferred option these days by Dr Slamon, due to the heart risk posed by herceptin and this drug! I think the preferred protocol I read was Cytoxin/taxol/herceptin but I may be incorrect and others may know more of this, even since I was dx a lot of the treatment and thinking has changed. I do wish you well in whatever you choose in treating this and please keep us posted!

P.S I'd like to ask you a question as I know an elderly lady (from another cancer site) who has bowel cancer and lives alone and is also from British Columbia but originally from the U.K and was wondering if there are any local cancer networks or forums I could direct her to there???
Thanks!

[MJo]

I went to a lecture by a very good oncologist a few years ago and he said the reason to be aggressive the first time you treat breast cancer is that you have a chance to knock it out. Once it comes back as Stage IV, it's chronic (hopefully that will change soon). I'm not sure what I'm reading in your post, but it sounds like your recurrence is not stage IV. So you have another chance to knock it out. I had adriamycin, which is also called doxirubin. It is very strong chemo and is no walk in the park, but it's aggressive treatment. I was also Est/Prog + and I took aromatase inhibitors for five years.

THis was agressive treatment in 2006 -- Adriamycin/cytoxen, followed by Taxol, with Herceptin introduced during the Taxol Treatment and continuing for 12 months. Then radiation. Then

[MJo]

Sorry. Pushed button too soon.
After radiation, 5 years of aromatase inhibitors or tamoxyfin if you were pre-menopausal.

Treatment has changed since then. As Tricia says, they've cut out the Adriamycin.

Good luck on knocking the cancer out for good this time.

[CoolBreeze]

Hi,

I guess I'm a little confused by what is going on with you. Where do you have a recurrence? Is it in your sternum?

Anyway, once they found out my cancer had recurred to my liver they put me on chemo immediately, and of course, I"ll be on it for life, as well as herceptin. I went on Navelbine, since I'd already done the full rounds of TCH. Now I get monthly Zometa, for bones (it's not in my bones, this is preventative).

It is only in my liver, and I had a liver resection done which is quite unusual and for which I'm grateful. I hope that put me in remission forever. I will have scans in February to find out. All HER2 women should be on either herceptin or tykerb (or both) once the cancer comes back, so if your oncologist hasn't mentioned that, you should bring it up. It seems odd that they would do the same chemo on you they already did but again, I might be reading it wrong? I am switching to Xyloda in December - my doctor thinks we stage IV women need to switch it up.

It sounds to me like you got appropriate treatment for an early stage woman - I'm sorry you are dealing with cancer again. Scans can only find it at a certain size so scanning everybody is not appropriate and you are usually symptomatic by the time your scans will show up.

I hope the rads and other treatments go easy on you. Yes, I do think it is harder on our families sometimes.

[suzan w]

for severe osteoporosis I did daily injections for 2 years of Forteo ( 18% increase in bone mass) and a final Reclast infusion to "cement" the bone increase

[Jackie07]

Hi Caroline,

I am sorry that cancer has been found in your Sternum. From the chart listed in the "Calling all Stage IV Sisters" thread http://her2support.org/vbulletin/showthread.php?t=48453
I've found four members who have treated mets to Sternum: Emelie B, Kim in DC, Michka, and SoCalGal. You can use the 'Members List" Button to locate their postings and treatment history. You can also 'private message' them in case they miss reading your postings.

Having a recurrence is a frightening experience. But we do see members attain the status of NED (No Evidence of Disease) even in a stage IV situation.

There's an organization called Y-me http://en.wikipedia.org/wiki/Y-ME Maybe we can use the slogan "Why Not Me?" when talking about achieving the 'NED' status.

Sending you good vibes.

[NEDenise]

Jackie!
I love that idea!
That's a good mantra for all of us when we consider stats...someone is in the DFS group...WHY NOT ME?!!

You are so clever!
Denise

PS- for those who don't know...DFS = disease free survival

[CarolineC]

Hi everyone,

Thank you so much for your responses. Tricia, I live about 10 minutes from the British Columbia/Washingston state border; about 2 hours from Spokane, WA. In my past experience I was helped by the BC Cancer Agency at 1-888-939-3333 who connected me with someone with a similar diagnosis-maybe they can help your friend find a support group or be connected with someone who will help her.

Jackie,
Thank you so much for your information! I will try to contact the members on this board who have had experience with bone mets.

I haven't posted for awhile because I've been so busy-the rib problem has had me visiting 3 different physiotherapists to alleviate the pain I have- everytime I have to lay on the bed for radiation I have pain in my right shoulder that is finally starting to get better. I've had 13 treatments out of 20 and am applying alot of Glaxol Base cream at least 3 times a day. I've had alot of company over the past few weeks, and last Tues I had my 50th birthday- never in my wildest dreams did I think I'd be spending my birthday having radiation. The receptionists at the cancer clinic blew bubbles for me when I arrived and some women that I met from the local support group last year when I had 25 treatments of radiation gave me birthday cards as well as a nice ornament that said "believe". I am blessed.

Coobreeze, I'm trying to understand exactly what has happened in my situation. I have a 3 cm area of my sternum that has been destroyed by cancer either from a lymph node or when the cells were circulating through my body they settled in the area. (?) They're not quite sure what happened but the radiation oncologist wants to treat it aggressively, hence the 20 treatments which will overlap partly with the previously treated area. So far I'm just taking one day at a time.

The plan is also to have a different chemo than the first time. Docetaxel has been mentioned but yesterday I discussed maybe another chemo that will be just as effective like Navelbine (?). I will start that along with Herceptin after my radiation and the onc suggested to wait until after Christmas but I have most likely had this for at least 6 months so am willing to start ASAP instead of waiting for anything more to happen. It's hard to decide what to do because the docs have said it's unusual to be only in one place and it will most likely recur. I'd like to think if I'm aggressive for a second time that I can be NED like some of you. Even though my met is in my sternum I'm almost identifying with Coolbreeze in that it is in one place and would like to think I won't have to deal with this anymore.

The receptors have changed from 90% ER+ to 15%, I am now PR- and the HER2 part is 3+. I will most likely start the chemo through my arm for the first treatment and have the port reinserted in the New Year. I will stop the Letrozole during chemo but continue to take the bone-building Clodronate. Has anyone had the same experience? Any suggestions for chemo?

[CarolineC]

Well, I've completed the 20 rad treatments and am now waiting to start Herceptin by itself on Fri. I had consulted with one onc in Kelowna (the bigger centre) and we decided chemo (either Docetaxel or Navelbine) with Herceptin and no hormonal treatment during or after. Then I come home and after talking to the local onc I got the feeling he didn't think chemo should happen for now. He said there have been studies that Letrozole and Herceptin have been effective. He has set me up for Herceptin by itself until the next step.
Have any of you been on the anti-hormone and Herceptin or have you done the chemo and Herceptin. I would like to hit it again aggressively and then back off to Herceptin but of course I'm flip-flopping on what type of chemo and even if I should do chemo. At least the first time I just followed protocol and was told what my treatment would be, but now there are decisions to be made by me. I'm even wondering if I should be having Herceptin this one time or just wait until the New Year to start chemo and H. The local onc also said that Docetaxel is abit more effective than Navelbine. I was leaning towards Navelbine because I have Raynaud's and don't know how my hands would take the frozen mitts while on Docetaxel and I wanted to keep my hair so I could be as "normal" as possible for my son and daughters. Now I feel that if there's a chance to keep it in remission I would lose my hair and do anything I could for a more effective, although more toxic treatment. Arrghhh! I also saw a dentist who treats cancer patients and she suggested I see an endodontist for a possible root canal before I start chemo and that is next week.

Jackie, I think I will PM the members you suggested. I was so busy while away with my company trying to keep my mind off everything, but now that I'm home I have to focus and make my decision so that I can move on.

Any suggestions?

[tricia keegan]

Caroline I'm sorry I dont have suggestions for you but do wish you well with whatever treatment you choose and hope you have a good response, and thank you for your info regarding my earlier question

[dawny]

Hi Caroline

I just wanted to wish you luck with your decision. I was on Abraxane and Herceptin, and now continue (indefinitely) on Herceptin alone.

Dawn