New developments might change everything?

Chelee · 11-12-2009, 10:57 PM

I have my surgery scheduled on my femur next wk. Due to waiting on 2nd opinions, & now the recovery time this surgery will require I am very concerned about my cancer spreading. (Since my recurrence on 9-22-09 all I’ve had is Herceptin/Zometa) I’m having more pain in right axilla & itching. Pain & burning over sternum area which is new. I am almost positive I feel an enlarged node in the superclavical area that I found yesterday on bc side. Recently found on MRI was two borderline nodes in inguinal region. If I have this surgery on the Nov. 18th that will be a minimum of another 14 days barring no complications before I could start chemo? I’ve always found any recovery is always longer then what I’ve been told. With all these new symptoms popping up…do I dare wait any longer?

I hope this Ortho is right about my risk for fracture? (I had heard he treats very aggressively which is fine as long as this really needs to be done now?) I hope this Ortho realizes the terrible position this puts me in? If I don’t do surgery to repair femur and it does fracture…that would have me down a good 3 months or more recovering…let alone the serious risks that come along with a fracture like that. And if I went ahead and did the chemo first for a few months to knock down the cancer I would be stuck in a wheelchair and using this walker which is getting real old. Lots of trips back & forth to trt confined to a wheelchair. I’m an invalid right now. But with all the new nodes popping up, along with this new sternum pain I’m getting really scared.
I put in a call to Dr. Slamon's office in hopes his NP would return my call today so I could explain this predicament I've found myself in. (A very serious one at that!) I was hoping Dr. Slamon's NP could give me her opinion on this situation. But no call back today. My onc still says no Tykerb while I am recoverying from surgery & I still don't buy that!? Tykerb should not interfer with my surgery...unless it's the hand foot issue I've heard about?
I know this has to be my decision...but if this was you what would you do barring these new nodes popping up...and the new sternum pain?

Chelee

hutchibk · 11-13-2009, 01:29 PM

I am really curious about this reasoning which seems somewhat absurd. I read on other forums (breast, ovarian and osteosarcoma) about patients who have infused chemo (often tough ones on the WBC like carbo and taxol) pretty immediately (maybe a week) leading up to surgery and then again starting 10 days to 3 weeks post surgery...

Have you asked about maybe adding Xeloda orally to the Herceptin? I hope Dr. Slamon's office calls you back soon. I am not an expert, but Tykerb should have no effect whatsoever on your surgery or recovery from it.

Chelee · 11-13-2009, 08:46 PM

Goodness, 178 page views and one reply? Not much anyone can say I suppose. (I'm just stressed...o'well.)
Brenda, Thanks so much for your reply about the Tykerb issue. I had so hoped Dr. Slamon's office would return my call so I could ask their opinion if I would be alright adding Tykerk/surgery? But they never called back which is not like them?

Elaine on this board said she had a complete hip surgery done after a bad car accident. They let her do chemo & she was fine. Plus she was doing chemo drugs that are hard on the counts unlike what I'm asking for. Tykerb wouldn't seem to be a problem? Unless the hand - foot syndrome I read about would be a concern? But since no one down there talks to me how would I know?
Today I read my HMO book and it says "If you and your doctor don't agree, then I have a right to ask for a written notice of why I'm being denied the care I felt I needed? It says she has 48 hrs to respond. I called my case manager today and told her from now I want everything in writing from my onc as to her decisions concerning my care...especially since she doesn't bother to talk to me.

I was at my cancer center today and my onc KNOWS I'm concerned about a new node in the clavical area & she ignored me again. She also refused my CA 27.29 again today. Whatever.
(Thank you Brenda!)

Chelee

Rich66 · 11-13-2009, 09:13 PM

I don't understand the being ignored part. Are there no RNs or NPs running interference for the doctor? No one to explain anything? Is there only one onc in the HMO?

ElaineM · 11-13-2009, 09:40 PM

Yes. I really did have a complete hip replacement without even skipping any chemo or Herceptin. I was receiving Herceptin, Navelbine and Arimidex at that time.
The onocologist came to see me in the hospital after he found out about the accident. I just told my oncologist to save my life. If the hip took longer to heal, because I was getting chemo, so what?? What's the sense of having a great fast healing hip if I didn't survive the cancer? I told the oncologist I was in bed in the hospital anyway, so I might as well get my treatment. If I didn't feel well after my treatment I could sleep it off. Smile !! I also told him if the orthopedic surgeon didn't want to do the surgery under those circumstances I would find another one who would be willing. He talked to the orthopedic surgeon who agreed to do the surgery as planned. As I mentioned the surgery was finished very early on a Thursday morning and I received my treatment as usual on Friday. I continued to receive my weekly treatment for the entire time I was in the hospital and rehab center receiving physical therapy for the hip. My blood counts held up just fine, because I continued my prescription vitamins, supplements and liquid iron from the naturopath too. I was one determined woman !!!!!!
I still am. I don't like the answer, "no" or "you can't do that." I usually find a way to get the job done or get the treatment I need, even now. I still do that.
I think you just have to decide what your priorities are and go after them no matter what that takes.
Good luck. Hang in there and don't let anything or anybody get you down !! You need all the strength you can muster !!

tricia keegan · 11-14-2009, 02:30 PM

Chelee,

My friend had a tumour removed from her brain but only needed to skip two weeks of tykerb. I'm not sure if she had the chemo but know for sure the onc said tykerb was okay.
I'm really so sorry you find yourself in this situation, would it help to speak to your onc and ask his opinion on whether the delay re chemo would be harmful?
Are you in pain?? If I had to make this decision myself I think it would be based on how much pain I was in. If this is bearable I'd take a chance and go for the chemo first. Wish I could help you more but am thinking of you.

BonnieR · 11-14-2009, 02:40 PM

Hi Chelee, I am one of those "viewers"! I am interested in keeping an eye on you but really did not have anything new to add in the way of suggestions. Just want to support you and see what others have to say.
Keep the faith.

Ceesun · 11-14-2009, 04:45 PM

Chelee, Back in 2003 I had a lumpectomy and 10 days later major thoracic surgery (non cancer) recovery was very tough as I ended up with a PE.. nevertheless, I began chemo 2 weeks after surgery per my onc. Just an FYI Ceesun

Lien · 11-14-2009, 05:00 PM

Dear Chelee,

I'm so sorry you are going through all this. Your reasoning seems right: what's the use fixing your leg if you are dying from cancer? Perhaps you should send your onc an old fashioned snail mail letter asking her this.

Something like:

Dear Dr. xxx,

As I haven't been able to talk to you recently, and as I don't feel you are hearing what I'm saying, I decided to write to you. I have some very serious concerns about my treatment plan and am not getting the answers I need to help me make a decision.

I am worried that my cancer is spreading rapidly and I don't feel that your treatment plan is adressing that issue. I don't understand why I can't have chemo or Tykerb right now. I know others who have had chemo right before and soon after complicated surgeries. If my leg gets fixed but the cancer spreads, I'm in more trouble than I was before.

I am very upset and feel I am not receiving adequate care. If you think you are doing the right thing, please explain to me why I can't get the treatments others are getting and that Dr Slamon, who did a second opinion, recommended.

Yours sincerely,....

I think I would hand deliver the letter and demand a receipt. This is ridiculous. If she can't offer the kind of treatment you need, the least thing she could do is sit down and explain it properly.

This is such a tough situation and I don't blame you for feeling very frustrated, upset and angry.

Hugs

Jacqueline

Yorkiegirl · 11-14-2009, 05:55 PM

Chelee I am so sorry for all the trouble and upset you are running into. I wash I could do something for you. I do continue to keep you in my prayers.

alicem · 11-14-2009, 09:14 PM

Chelee,

I also do not have any advice to the medical situation you are in. I DO have experience with not having things in writing and later on regretting that only phone calls and verbal conversations were all I had to back up a situation. I am glad that you are getting something in writing. Although it can be a pain, I highly recommend putting everything in writing from now on. When you make a phone call, follow up with a written e-mail or a letter. Also request everything in writing from all of your doctors. You really need to have a paper trail.

Alice

Chelee · 11-14-2009, 11:47 PM

Jacqueline, I already sent you a PM...but I did tell the "case manager" at the hospital Friday that from now on I want everything in writing from my onc and her. (Case Manager) I will also be putting everything in writing so that they can't say they weren't aware of the problems I've been having which they are causing me intentionally. (No one would even believe what they have done to me just in the last two weeks...I wouldn't believe it if I hadn't lived it myself!)

I just wrote a bunch of stuff but I deleted it. There is nothing anyone can do so it's useless for me to go on about it. But thanks for the suggestion as its a good one. I've documented everything here at home...but now I will follow up everything by certified letters and FAXES.

Thanks so much to all of you...I really appreciate your support...I'm just feeling so helpless. I don't know how my onc or any of these people sleep at night.

Chelee

Lani · 11-15-2009, 01:49 AM

Chelee I think the problem here is lack of knowledge(noones fault, they just don't know)

As all the information about the side effects of Tykerb listed on its package insert cover the side effects of Tykerb given together withCapecitabine
(the only FDA-approved way Tykerb can be prescribed) noone can separate out which side effects are due to Tykerb alone.

Among those side-effects are those involving platelets--those blood elements that make bleeding stop. Each "chemo" or targetted therapy has its own profile of how likely it is to cause each or any of the blood cells to decrease and it is likely that some patients are more prone to experience this effect than others.

One reason they might not want you to have tykerb might be because they don't want you to bleed to death from your surgery.

Another may be because they have not yet worked out the effects of her2/her3 on bone healing. They seem to have an effect on bone and cartilage development in the embryo and the bone healing process has a lot of similarity to bone/cartilage development in the embryo. Rods, plates, and/or screws are not enough to hold the bone up indefinitely--the bone needs to heal to keep the construct from rebreaking.

I think perhaps a big part of the problem is the mindset that oncologists and oncologic surgeons may have about those who are Stage IV. If they can't "cure" them they immediately switch into the "palliative mode" which seems to put their built-in spedometer on slow. They seem to have only two speeds

I remember the first breast cancer conference I attended where Dr. Daniel Hayes said that those who were stage IV were incurable and in addition they survived only two years on average, He lectured that since they weren't going to be cured anyway, the only decisions to be made were whether they survived slightly longer or more comfortably by giving one drug at a time, combining drugs, or finding out which sequence of drugs made the patient more comfortable ie, the more tolerable one's first vs the more effective ones first.

Thing are changing with her2 targeted therapies,particularly the expectations and prospects of those who are StageIV--look at how long-lived some of the Stage IV ladies on this board are-- some doctors don't seem to have "gotten it" yet, I guess

I only rattled on to guess as to why no one seems as eager to get the systemic treatment going right away as you are.

Hope this helped.

Rich66 · 11-15-2009, 02:31 AM

If they can't "cure" them they immediately switch into the "palliative mode

Yup. And if they don't incorporate new strategies and tools, they will be right. But that will make them simply "average".

Push on, Chelee. No expiration date on you.

Sheila · 11-15-2009, 06:24 AM

Chelee
Would there be any way to see Dr Slamon again before the surgery....that would be my route...to at least take his recommendations as to whether to add the Tykerb now...which may involve a fight to get it.....might be easier to get it ordered with the Xeloda, and dont take the Xeloda....remember, i waited 7 weeks to get the Tykerb after it was ordered...appeal after appeal....If he agrees you should be on it, i am sure we could round up enough extra "T's from this group to keep you on track till you get your own.....stay strong Chelee, you will come out on top!!!!

hutchibk · 11-15-2009, 10:38 AM

I had surgery while on Tykerb and Herceptin in February. Neither surgeon or oncologist suggested/worried that I should stop taking my Tykerb, however it wasn't surgery to a bone. I had been on it for about 2 years at that point, previously with Xeloda.

I wonder, though, if Xeloda might be an option for you now as a new systemic therapy, adding Tykerb in later after you fight your onc for it and win...

And after surgery - I would put my mind to finding a new onc immediately... I know a great one in the LA area that my friend goes to.

ElaineM · 11-15-2009, 11:55 AM

By the way, in addition to my hip surgery, I also had two cataract surgeries,breast surgeries and multiple surgeries by a dermatologist without ever skipping any Herceptin, Tykerb and chemo too. I do know that we should stop medicines like asprin, vitamin E and anything else that tends to thin the blood a week or so before surgery to prevent extra bleeding during the surgery. We can restart those medicines a couple days after surgery.
I put and get all the important stuff in writing and get copies of all my test results etc. If I don't get what I need from one doctor I find another one willing to help me. Occassionally I have had to pay out of pocket, but I got the treatments I needed. It has not been easy, because I am not a rich woman. I save a very small amount out of my household budget every week for that purpose. Even saving $5.00 a week helps. I also owe money for uncovered medical expenses, which I pay a little every month for, but I am still alive and kicking and that is the main thing.
I know what you guys mean about if we aren't totally 100 percent cured within the first year regardless of what stage we are some doctors start giving up on us. They don't offer us the latest treatments. I do alot of research and make suggestions whenever it is appropriate to do that. I keep telling my docs I will be showing up for check ups when I am in my 90's, long after they have all retired.
That is the plan !!!!!!!!!
Hang in there Chelee !!!!!!!!!!

StephN · 11-15-2009, 12:14 PM

Dear Chelee -
I have been following all this, as I mentioned before. Having not had Tykerb, I can't say much about that. Lani seems to have some theories that make sense, even though WE think they are flawed from our standpoint.

Are you still having your femur surgery on the 18th?? I sure hope so, as that will get the ball rolling in a big way. Get that done, please.

If it were me, I would want to know that my legs would hold up under me while I have to be on the go for the rest of my treatment. You will be able to fight the rest in a very short time.

Chelee · 11-15-2009, 03:59 PM

Lani about covered it all...which makes the most sense about the Tykerb issue, and the way I'm being treated. (Or lack there of.) I have felt like since I'm stage IV they have totally given up. The day my onc told me in the exam room I recurred to all these areas...no matter what I asked or said she would just say "It doesn't matter now...the horse is out of the barn". (Along with a pathetic look like I didn't stand a chance.) She gave me no hope...where as Dr. Slamon was so different. As I've mentioned before he was so excited about me starting the TDM1...I left his office with hope. That's the kind of onc you need behind you in this situation.

Shelia it won't be possible to see Dr. Slamon before my surgery. I have bone scan in the morning...pre-op visit up at City of Hope Tues., & my surgery is Wed. the 18th of this wk. (Unless my group manages to cancel/block me again!) They have done their best to stop it from happening.

Thanks Steph...I agree...I have to get my hip fixed like it or not. It's been a major pain being stuck to a walker. I miss my walks in the park with my dogs. Can't do my house work, run errands...or do much of anything. I've been misrable shuffling thru this house & to appts. I just PRAY this bone scan doesn't show my other hip is ready to fracture too. It lit up on baseline PET too.

I need to get on my feet again because if I do get a chance to get into a TDM1 trial as Dr. Slamon recommended for me...I need to be upright.

Thanks Lani...your post was very informative...I really appreciate you input. The attitude of so many of these onc's when it comes to stage IV is depressing. Things are changing...you think they of all ppl would know this!

Chelee

Ruth · 11-15-2009, 06:42 PM

Chelee ~
I wish I could help you with this but I just don't have the knowledge so I am sending you a giant big enormous hug in my heart and mind.
Ruth