Trt stopped, & now a wheelchair & walker...
 

I went up to City of Hope to see Dr. Femino (Orthopedic surgeon) about the tumor on my rt femur. He left the room & ordered a walker & wheelchair for me & said he is very concerned about it fracturing. He wants to place a rod down my femur to the knee. He also recommends radiation to the area. So I left their using a walker & only allowed to toe touch on right foot. Now I have all kinds of new pain in upper arms, shoulders, & back & you name it from using walker.

As most of you know I was scheduled to start Navelbine/Herceptin this coming Tues. But Dr. Femino woulld like to do surgery on Nov. 18th. Obviously I can't start chemo if I do the surgery unless I live in a wheelchair for months. Now I'm really stressed out. My onc & both 2nd opinion onc's wanted me to start trt soon. It's already been over 40 days since I was told of my recurrence. Now with this surgery that will make it a total of 70 plus days with no chemo other then Herceptin/Zometa. I'm very worried about all the delays in starting trt. I don't know what to do? But my hip is killing me and I know it needs repaired. But that would make it about the 2nd wk in December before I could start the Navelbine...do I dare wait that long? I hate all these decision we have to make!

Chelee

Re: Trt stopped, & now a wheelchair & walker...
 

Can you at least do the Herceptin and still do surgery?

Personally, if it were me, I'd do the chemo first.

Re: Trt stopped, & now a wheelchair & walker...
 

Chelee,
Are these doctors talking to each other? Sounds like they need to be. It may be possible for you to have the surgery AND get chemo. (not that any of us ever signed up for wanting all of that!)

Re: Trt stopped, & now a wheelchair & walker...
 

Brenda, Yes I will continue to get the Herceptin.

Chrisy, The Ortho doc went out in a private room to talk to my onc. He came back and said my onc would prefer me to do the surgery first. I tried to explain to him she doesn't care what happens to me either way. It was urgent I start chemo well over month ago...now she doesn't care. Like I told the Ortho doc...what good does it do to fix my hip if the cancer spreads all over. A repaired hip doesn't help me much if I'm dead. I can't win.

Chelee

Re: Trt stopped, & now a wheelchair & walker...
 

Chelee,

It's YOUR body, so you need to do what your gut feeling is telling you to do. I just submitted a thread about bone mets, osteoporosis and strontium. It may help to stabilize the bone until you can get surgery. If the strontium isn't for you I would say stick with the walker, keep weight off the leg and get going with chemo. Have they suggested that chemo may shrink the tumor on the bone? What does Dr.Slamon say?

Dianne

Re: Trt stopped, & now a wheelchair & walker...
 

Oh Chelee, I really feel for you. This just sux. Pardon my French, but it does. Didn't you say your markers were going down a bit with vit H? I hope it's working its magic on you. It may well be buying you enough time while you get your hip fixed.

Hugging you gently

Jacqueline

Re: Trt stopped, & now a wheelchair & walker...
 

If you could get it Herceptin DM1 would be treatment for you as it is a toxic agent directed by a smart bomb ie, it would not affect any cells other than those bearing excessive her2 receptors.

The reason they don't like to do surgery when patients are on chemo as there is an increased risk of bleeding (the platelet forming cells are affected by the usual "carpet-bombing" chemo which affects ALL rapidly proliferating cells INDISCRIMINATELY), increased risk of infections (the white blood cell forming cells are also rapidly proliferating cells) and decreased would healing and bone healing (ditto--inflammation and scar formation and later remodeling require rapidly proliferating cells)

Herceptin DM1 does not fall in that category and should not theoretically put you at risk for increased bleeding, increased infections or decreased/delayed healing. Could Dr. Slamon make an argument for that in your case in order to get you into a Herceptin DM1 trial? Could Dr. Eckhardt concur?

Could your HMO make an exception based on the extraordinary circumstances you find yourself in?

If you remember, when I last posted I asked if you were so much risk for fracture why hadn't they put you on crutches?

Always best to look two steps (with or without crutches) ahead!

Re: Trt stopped, & now a wheelchair & walker...
 

Chelee, a new dx is bad enough without having to make these choices. Personally I'd go for the chemo over surgery first.
I hope you get more advice and am so sorry you're in this position.

Re: Trt stopped, & now a wheelchair & walker...
 

Actually, the platelets do fall in the T-DM1 trial. I had frequent nose bleeds. Chelee, I really think you should try to get into the T-DM1 trial. However, I don't think you can get into it until you have surgery. In the meantime, you can continue with the Herceptin. It seemed to be helping. T-DM1 is very effective and easily tolerated. You would find it much easier to endure than Navelbine.
T-DM1 worked for me for two years and was still working, but it gave me lung inflammation. I'm the only one who had it so don't worry about that. I had to go off the trial for my safety, but will still consider it an option when it is eventually approved.
Good luck, Chelee. I just have a feeling that you will be OK and be in much better spirits one you have this surgery behind you.
Best wishes,
Barbara H.

Re: Trt stopped, & now a wheelchair & walker...
 

Chelee, I wish I knew some brilliant advice to give you! My heart really goes out to you, though all I can offer is my love and prayers. I can imagine how frustrated you must be! Several have replied to you here with what seems to me to be good advice. The suggestion to get more information, especially from Dr. Slamon if you can, seems the most appropriate. I know it is hard to post and keep us informed with all you are going through, but remember that we are all concerned and thinking and praying for you. Hugs, Tricia

Re: Trt stopped, & now a wheelchair & walker...
 

Chelee,

I just wanted to say I'm praying for you and I keep coming back to check how you are doing. I don't have any advice. I'll just pray that God puts the people and the information into your life so you can feel good about the decision you make.

Love,

'lizbeth

Re: Trt stopped, & now a wheelchair & walker...
 

I was beginning to wonder about you. It is your body, so you should have imput as to what happens. Remember I am the one who had major hip replacement surgery that finished early on a Thursday morning and still had my treatment on Friday afternoon while I was still in the hospital. They even put me in a wheelchair and in a van and took me to the oncologist's office for my treatment every week after I transfered to the rehab hospital. I was able to do daily physical therapy for my hip. If I were you I would at least take Herceptin during the recovery from the surgery. The whole thing can be accomplished with everyone's cooperation.
I have my fingers crossed for you and I will say a prayer that everything will go well. Take care.

Re: Trt stopped, & now a wheelchair & walker...
 

Chelee - What a huge new complication to everything. I'm sorry to hear you are now facing this added challenge. It seems more people replied they'd postpone the surgery & get on chemo. I think I'd go the other way. Of course I'm an expert at nothing, this just is what my gut is telling me. If it were me I'd try to get that surgery date moved up if possible & get that taken care of before there's any fracture. I'd definitely continue with the hercptin/zometa uninterupted. The fact that your number are down since starting this is a sign that you are knocking back the cancer with this. After surgery I'd push to get started with the added chemo as soon as possible. I know you are scheduled for the navelbine, but in the meantime if you could get accepted in the t=dm1 trial all the better. Only my take on things, you are a good decision maker and will make the right one for you. I'm routing for you. BTW I've had my 3rd navelbine trt this week & so far I feel great - no nausea or any complaints. I'm praying that when I get more markers drawn in a couple of weeks they'll show that it's working.

Re: Trt stopped, & now a wheelchair & walker...
 

Chelee I'm sorry you now have these problems. What makes me mad is that another Doctor went out of the room to discuss YOU with another doctor when you were in the other room. NO WAY would that fly with me. Hell they should have both been in the room with YOU, so you can say what you need to. Prayers going out for you.

Re: Trt stopped, & now a wheelchair & walker...
 

Chelee, I'm so sorry you are having such a difficult time. Please know that you in my thoughts and prayers.

Re: Trt stopped, & now a wheelchair & walker...
 

What a difficult and frustrating situation. Could you add Tykerb to the Herceptin and still have the surgery? I can't remember if you are the person who successfully fought to have your insurance approve the Tykerb.

How about e-mailing Dr. Slamon, explaining the problem, and asking for a conference call with you, the orthopedist, and Dr. Slamon on the phone?

Jill

Re: Trt stopped, & now a wheelchair & walker...
 

Hmmm....

Not a doctor of course...but it seems you are walking a tightrope for sure. I think I have to line up with Pam on this - both in terms of "being an expert at nothing" and thinking to get the surgery over with first.

My thought would be to try and maintain - hold things stable - maybe with the Herceptin/Zometa/Tykerb or somethin else "gentle" long enough to have the surgery, then follow with the chemo. You do not have to slam the cancer into remission right now - just slow/stop the growth for the time being.

If you can get the surgery behind you, you can go full bore with the systemic treatment. If you go full bore with the systemic treatment now, that could complicate or delay the surgery.

Lani's point is well taken on why the surgery would be dangerous if you are on a carpet-bombing therapy. However TDM1 DOES impact platelet counts, so might not be advisable before surgery - even if it were allowed by trial protocol (which I doubt).

I also think you are entitled to understand the reasons behind your doctors decision to prioritize the surgery. They are YOUR team, they are working for you and I do believe they are trying to do what they think is best for you. In the end, the decision should be yours, not theirs, so you need to understand why they are recommending what they are.

Chelee, I know this is a really complicated set of circumstances you are trying to navigate - and I really admire your strength and determination. You are a fighter and I'll bet 6 months from now you'll look back at these rough waters and say "WHEW - I didn't think I'd get through THAT - but I did" and you'll keep on paddling forward.

Stay strong...
Chris

Re: Trt stopped, & now a wheelchair & walker...
 

placing an intramedullary rod down a femur if I understand you correctly is a
rather bloodless surgery. It is done with a small incision and the guidance of the rod is done by watching images on a portable fluoroscopy (xray machine) so actual cutting of tissues is minimal.

If you misunderstood and the surgery they plan is more extensive, say for a subtrochanteric metastasis, it is possible they might have to do more dissection if I understand the situation correctly.

Either way, you would not qualify for nor receive TM1 before having your surgery, but you could apply for it and if you only needed the intramedullary rodding and your incision was healed one or two weeks thereafter, it probably wouldn't matter than whether your platelets were decreased or not.

So the question is whether your insurance would pay for herceptin+lapatinib--and whether the orthopaedic surgeon would want you on Zometa. Bone healing and remodelling are a balance between the work of osteoblasts (bone forming cells) and osteoclasts(bone destroying cells). I would ask the orthopaedic surgeon if Zometa alters the balance in a way that is or is not be beneficial to bone healing right after surgery.

It certainly helps fight the effect breast cancer mets normally have on bone, it is only a question of the timing.

Just food for thought

Re: Trt stopped, & now a wheelchair & walker...
 

Trends Endocrinol Metab. 2009 Oct 9. [Epub ahead of print]
The EGFR network in bone biology and pathology.
Schneider MR, Sibilia M, Erben RG.

Gene Center, LMU Munich, Munich, Germany.
The resorption, formation and maintenance of bone are coordinated by the action of several hormones, growth factors and transcription factors. Recent experiments based on genetically modified mouse models, gene microarrays and pharmacological intervention indicate that the epidermal growth factor receptor (EGFR) system plays important roles in skeletal biology and pathology. This network, including a family of seven growth factors - the EGFR ligands - and the related tyrosine kinase receptors EGFR (ERBB1), ERBB2, ERBB3 and ERBB4, regulates aspects such as proliferation and differentiation of osteoblasts, chondrocytes and osteoclasts, parathyroid hormone-mediated bone formation and cancer metastases in bone. Here, we summarize and discuss the role of the EGFR and its ligands in skeletal biology and pathology.

PMID: 19819718
Bone repair in adulthood has many similarities to bone development in the embryo.

Re: Trt stopped, & now a wheelchair & walker...
 

I would also be worried about going so long without chemo. I don't know what to tell you to do but demand that your doctors get together and listen to you...sherry

Re: Trt stopped, & now a wheelchair & walker...
 

It seems I don't have much choice other then to have the femur fixed first. I can't do anything since I can't put any weight on my rt hip. I am so tired of sitting here! This toe touching crap isn't easy...I have to put too much body weight on upper arms & it's painful. In fact when Lani mentioned crutches I decided to dig out an old pair we have. It's alot better then the walker & I can move thru the house quicker!
So it looks like I'll have to do surgery first, but I'd be lying if I didn't say it is scarying the heck out of me to wait to start trt. The Ortho said I would be at the hospital for 3 days & start walking immediatly the following day. Then I would come home & have another 14 days to let it heal & then start chemo. (Barring everything goes as planned with the surgery.)

It was obvious the Ortho was not happy with my onc telling me my hip was fine. His tone of voice went up and let me know he totally disagreed with my onc! So looks like I have to get this fixed because I can't do anything in this condition. I will be continuing Herceptin & will find out this coming wk if TMers are still dropping with herceptin alone? I'm uncertain about the Zometa? I've read that you need a washout period if your having surgery...but yet this Ortho said it's no problem?

Chrisy I sure hope your right about me looking back on this in six months. With so much recurrence in my body and no chemo has me so worried. Right axilla & liver area has pain that was not there. Then the newly found borderline inguinal nodes worries me. Just so much time keeps going by with no trt. I might try to call Dr. Slamon's office again but I only paid for a consult that one time...don't want them getting upset with me? I've called there prior to this a few times. Although his NP has been so nice! I need to do something...I just don't want this spreading anymore then it has. I still might look into the Tykerb...although I'm not sure how diarrhea works when you can't move very fast after a rod is placed down femur. This seems like a good argument for getting a ok for herceptin/Tykerb.

Chelee

Re: Trt stopped, & now a wheelchair & walker...
 

Chelee,

Is it possible to check with Dr. Slamon about what he would do?

I'm praying for you.

Hugs,

Joan

Re: Trt stopped, & now a wheelchair & walker...
 

Hey Chelee,

Just wanted to let you know that when I did Tykerb/Herceptin I rarely had diarrhea and got no rash at all.

On the other hand, I seem to be having a rougher time than some on TCH.

It just goes to show we all react differently--I've read some posts where women have to stop Tykerb due to the side effects. The only issues I had with Tykerb was some fatigue and mouth sores which fall more into the uncommon side effects......

I was concerned about the impact all these drugs, including chemo, would have on my bones fusing properly in my neck since I had surgery in April of this year. I have metal and bone in my neck for fusion at C5/6 and C6/7.

Just wanted to share even though the procedures are probably different.

My neruosurgeon told me not to worry about it, he thought it would be fine.

One thing they did give me was a bone growth stimulator that I wore 4 hours every day for the first 6 weeks. I'm not sure if you will be dealing with bone fusion but wanted to pass that along. I would think it would work for any bone, not just the neck.

If this is something your doctor feels would help, and you can't get your insurance to pay for it, I would be more than happy to loan mine to you. They cost over $5,000 and my insurance paid for it.

Take care of yourself:)

Re: Trt stopped, & now a wheelchair & walker...
 

As I understand it, Bone growth stimulators have to be programmed for the shape of the bone and the location where they are used ie, neck vs wrist vs ankle . The electromagnetic field
generated is customized based on an xray of the area.

I would suppose the device could be reprogrammed--just don't know who you would get to do that. The device company wants to make more money, so I don't think they encourage reuse.

I also think having a metastasis in the area may turn out to be a contraindication to using a bone growth stimulator** (company afraid if the cancer got worse the patient would blame the device) and it is possible that having a big metal rod in the area might also be a contraindication. I remain ignorant of whether the weak area is in the shaft of the femur, the subtrochanteric area or???

**vlcarr--was your surgery done for arthritis/disc disease/stenosis or for mets?

Hope some of this helpful...

Re: Trt stopped, & now a wheelchair & walker...
 

Lani, you are amazing!

Re: Trt stopped, & now a wheelchair & walker...
 

Vicky, That's nice to know everyone doesn't necessarily get that side affect. That would be misrable to deal with while recovering from hip surgery. I'm going to discuss this with my onc, and see if my insurance company would OK this combo under my unusual circumstances. I'd feel better if I could add something to the Herceptin. That is sweet of you to offer your bone stimulator...but after reading Lani's post I don't think it's a good idea. She made some very valid points I would of never thought about. But I still appreciate the offer.

Lani if it helps my MRI report says there is a large heterogenous mass in the intertrochanteric region of the proximal rt femur measuring 6.4 x 4.7 cm. The surgery the Ortho explained to me, sounds exactly as you outlined in your other post to me. You have it correct. Thanks to all of you for your help...this has been stressful.

Chelee

Re: Trt stopped, & now a wheelchair & walker...
 

Chelee
I have strted the Tykerb, Herceptin routine...(see my post) and have started with 3 tabs a day, then up to 4, gradually upping it to 5, so far, no problems,,,hoping this would be an answer...i do know you cant get the T-DM1 if there is any surgery planned....it was in big bold letters on all the trials. Hope the hip gets fixed, and the Tykerb/herceptin keeps things stable until you can get the chemo...you might be surprised!
Sending lots of prayers and hugs.

Re: Trt stopped, & now a wheelchair & walker...
 

Wow- Sorry, I don't have any great words of wisdom -just wanted to weigh in and say I'm sending you good energy and thinking of you -

Hope you can get the surgery done and then back on your treatment program quickly.

Remember your mind is very powerful ---

If you have time - get a few books to read, while you will be in surgery and recooperating - (you can order them on line at amazon.com) my recommendations are:

A Cancer Battle Plan Sourcebook - by David Frahm

Cancer - 50 essential things to do - by Greg Anderson

Crazy Sexy Cancer Survivor - by Kris Carr - (will make you laugh - its hip and sassy!)

All three of these talk a lot about the power of our thoughts and how we need to control them to not be toxic and to talk to the cancer and tell it that it isn't that powerful --- (sometimes we give it too much power)

But might help you not worry about the time you are not "on" the chemo.

:-) Hope it helps!
Live long and STRONG!
Karen

Re: Trt stopped, & now a wheelchair & walker...
 

Chelee I have no profound words of advice, but just want to let you know that you are in my thoughts and prayers.

Re: Trt stopped, & now a wheelchair & walker...
 

Lani knows a lot more than I do about the bone growth stimulator. I just wanted to throw it out there in case it was something you needed. It makes perfect sense about the programming issue.

My surgery was for severe stenosis which is usually seen in elderly patients. This was my 2nd neck surgery (first in 99) and goes back to a car accident I had in my 20s.

Chelee, wishing you success and the strength you need to deal with this! Hang in there.