From TriciaK: Suggestions or advice, anyone??

[TriciaK]

I spent half a day yesterday at the hospital having an MRI of my head, then a PET/CT scan of the rest of my body, to see if the nodes in my right lung were shrinking or not. Since the last ca 27.29 had showed the markers rising I was naturally concerned.The markers showed around 68 in the summer of 2009, rose to 131 in May of 2010, then dropped into the 90's in the summer of 2010 after we started herceptin and navelbine, which had worked so well 5 years ago. THe markers then dropped into the 70's, but I had weird reactions to the navelbine so we have tried just herceptin since then. The markers are up again to around 87 now. My oncologist called me tonight at 7pm to tell me that the MRI showed no brain cancer, though there is an infection in the area of my left ear.He said the PET/CT showed that the largest nodule in my right lung has grown from 14.05 by 11.5mm to 16.8 by 15.2mm. ( It was 1.8mm several months ago.) He feels we have to start a more aggressive approach besides herceptin alone. He felt the navelbine helped but the reaction was too much, so is now suggesting gemzar with the herceptin. I should have infusions every week of both, skipping one week of gemzar, but doing herceptin all 4 weeks.
My questions to you all: 1. Are we moving fast enough? (The markers have been rising pretty steadily for a year except while briefly on chemo plus herceptin. Herceptin alone doesn't seem to be doing it as the markers are rising again and the largest nodule is growing) 2. Is the nodule size and growth a lot more worrisome? Should we start the new chemo + herceptin immediately? (I had a 3-week herceptin a week ago and the dr. is planning to wait two weeks before starting the new H+gemzar routine. Waiting makes me (and my husband!) a little nervous.) 3.Is gemzar the best chemo to add? Navelbine seemed to work but the side effects this time were horrendous and he is hoping the gemzar will work as well with less side effects.4.What side effects have any of you had with gemzar? 5.Should we try something stronger, and if so, what?
I am having trouble breathing (fluid in lungs have been a problem but the PET/CT showed the fluid is not as bad as it was two months ago when I had pnuemonia. I also have a lot of fluid in my ears which makes it difficult to hear). I am also very weak and dizzy and have no appetite. I frequently get nauseous and experience vommitting and diarrehea. (Also chemo brain as I have forgotten how to spell!!)
You all know the uncertainty and confusion of facing new mets and knowing just what to do. My oncologist is very respectful of my ideas and wishes, but at this point I don't really know what they are! Except to lick this new (4th) round of BC as quickly and efficiently as possible, as I have the past 3 rounds.
You have all been through so much and are such warriors I would appreciate any thoughts or advice or opinions you may have. I've been strong for over 25 years fighting BC but feel a little more shaky this time, because of other problems added to it, like age, heart problems, fibromyalgia and painful scoliosis from cancer in the spine 20 years ago). I'm not ready to give up yet, but want to go for the fastest most efficient treatments. I will still use self hypnosis, a good diet, positive outlook, etc., which have worked for me before.
I am so grateful for all of you and for any suggestions, comments, experiences and advice you may have. I can stay on herceptin as long as my heart stays where it is now (50 ef) but what chemo to add is my biggest question. Thank you in advance for any word of advice or help, and especially for the love and concern and prayers you have shown to me and others.
I am hoping 2011 will be the best year ever for all of us. There is so much hope! Love and hugs, TriciaK

[ElaineM]

I don't have any specific advice, but I wanted to tell you I definitely have my fingers crossed for you and I will say a prayer that you will get on a good drug combination to take care of your current problems. Keep doing all the healthy things you do and don't give up. It all helps. Hang in there !! Keep putting one foot in front of the other !! All the best to you in 2011 and beyond.

[chrisy]

Tricia,
Sorry to hear this is causing you such problems and anxiety. I'm not too knowledgeable on lung mets; I know navelbine can be very effective but seems not to be a tolerable option for you at this moment.

This may be out of left field, but is there any possibility of a localized approach - I believe JoanM had lung met resected and/or ablated with RFA. Of course these are not without risks of their own, but if this is feasible it may enable you to back it up with a less difficult systemic approach.

Much love,
chris

[Catherine]

Tricia,
So sorry that you are going through this for round number 4. Sure sounds to me like you are on top of "it." I have no experience or knowledge to add, just wanted to stop by and say "hi,and you are in my prayers." Also wanted to say that your chemo brain seems very organized and that you seem to be hitting on all fours. Keep on asking the questions. You and your husband have a right to be concerned. I hope that the posts here will help and that your doctor will come up with good solutions. You are hope and you represent hope well. Keep up the good work.

Hugs,

[Jackie07]

Tricia,

Darlene Denise posted the following a year ago about her experience on Gemzar:

I have been on the "gem" since the middle of December and have found it very tolerable. I started at a lower dose 3 weeks on 1 week off. Since my platelets tanked, onc decided to give me a higher dose every other week and that has worked well with my labs. I did require an Aranesp shot last week for low red cells. I have not had any side effect except some fatigue. Just some what tired and go to bed early kind of thing, nothing to wipe me out.

Had scans last week and the liver is responding so far.

I hope it gives you "gemtastic" results and is easy on you as well.

Let us know how it goes...Darlene

**********

Love and hugs to you, too.

[Pam P]

Tricia - I am sorry to hear you are facing all these issues. I don't know about lung mets so can't offer anything there on your questions. I do know gemzar is a good drug and is used a lot and tolerated well. I was on it for only a short time but felt very well on it. It did knock down platelets though. I'm wondering if you got an antibiotic for the ear infection? I think you and your doctor are very on top of things and are moving ahead. I wouldn't think waiting 2 weeks to start the gemzar should matter, but like you, I'd want to start now. Can you ask to start earlier? You remain in our prayers. I hope the gemzar with H will wipe out some of those symptoms of the lung mets quickly and shrink them back down to nothing. Will watch for more updates. Pam

[Sheila]

TriciaK
Although I have never had Gemzar, it seems to be a powerful chemo at knocking out the mets. The hard part is waiting to see if it is working. Glad you are able to remain on Herceptin. As always, you are tougher than this disease, and always in my thoughts and prayers. What about the new drug Halaven I am on...also known as Eribulen...many Dr's dont even know about it...I am having amazing results so far....might be worth asking.

[Mary L]

TriciaK, you are one brave women with a terrific attitude. You have my prayers and best wishes. If anyone can do it, you can. I am so sorry that you have to go through chemo again, a 4th time!! I hope all goes well. Mary L

[tricia keegan]

Tricia I'm sorry to hear the gemzar was not tolerated well for you. I really don't know as much as many of the ladies here re various drugs for mets, but have read recently of adding tykerb to herceptin but whether it may help your own situation I really don't know.
I think if you feel well enough to start sooner then I would if I were you, if nothing else I think it'll help you feel a little more empowered in doing something to beat this and perhaps less worried. I have no doubt you'll beat it as you have before and hope maybe Becky or one of the other members who understand this more will have some good advice for you.
I'll be keeping you in my thoughts and prayers for a good response to whatever you decide on

[Joan M]

Tricia,

I haven't yet taken chemo for mets, but only Herceptin since I treated the lung met locally with RFA, so I don't have any advice on chemo.

But as Chrisy mentioned I did do RFA, and you could ask your oncologist about ablation, especially since the lung is the only site of your metastases.

My lung met was 9 mm, and it was recurrent from a 1 cm tumor that was removed a year prior with a wedge resection using video-assisted thoracic surgery (or VATS, minimally invasive lung surgery). As you know I had a rare reaction with a fungus growing in the cavity leading to a thoracotomy in summer 2009.

But besides my own experience, RFA is available for tumors smaller than 3.5 cm, as long as they're in a position where they can be reached without harm or a problem. And your tumors seem within size range. Since having the local treatment, I've been on only Herceptin. The tumor in my lung was ablated in August 2008.

During the procedure I was knocked out with anesthesia. In my case, I spent a few days in the hospital because my lung collapsed during the procedure an a tube had to be inserted. Otherwise, an RFA is just an overnight stay. Also, a local treatment might free you up from chemo for awhile and let your body recover.

Here's something short from Wikipedia:

Radio Frequency Ablation of lung, kidney, breast, bone and liver tumors

RFA is performed to treat tumors in lung, liver, kidney, bone and (rarely) in other body organs. Once the diagnosis of tumor is confirmed, a needle-like RFA probe is placed inside the tumor. The radiofrequency waves passing through the probe increase the temperature within tumor tissue that results in destruction of the tumor. Generally RFA is used to treat patients with small tumors that started within the organ (primary tumors) or that spread to the organ (metastasis). The suitability of a patient to receive RFA is decided by doctors based on multiple factors. RFA can usually be administered as an out-patient procedure, that may at times require a brief hospital stay. RFA may be combined with locally-delivered chemotherapy to treat hepatocellular carcinoma (primary liver cancer). The low-level heat (hyperthermia) created by the RFA probe causes heat-sensitive liposomes to release concentrated levels of chemotherapy in the margins around the ablated tissue, which is a method commonly used to treat Hepatocellular carcinoma (HCC). Radiofrequency ablation is also used in Pancreatic cancer and bile duct cancer.

I would probably be able to get you a reference of a doctor in or near your area from the interventional radiologist who did my procedure. He's big in the field.

Always praying for you.

Joan

[TriciaK]

Thank you all for your concerns and comments. I have done a lot of thinking and research and praying in the past week, and really appreciate the information you have sent. I have a neighbor who is a radiology oncologist and I have decided to make an appointment to see him as soon as possible. Your post helped me decide, Joan. I didn't think I should see a radiology specialist as well as my regular oncologist, but now I think it would be a good idea to get some feedback from him. Having him evaluate the recent MRI, PET and CT scans could be helpful. I don't know anything about the RFA and/or ablation. Since I am not having good results with just herceptin with or without chemo, maybe I need to explore other options. My oncologist said on the phone that the tests showed no fluid in my lungs and no pnuemonia, but I am coughing continuously, sometimes dry, sometimes producing pnuemonia-like phlegm. I just do not feel well, and throw up at least once every other day. I am concerned about how more chemo may affect that situation, too. Thanks to all of you, I now have some more things to consider. I'll let you know how it all plays out. I am still in fighting mode but have felt a little unsure of the next step. Thank you so much for posting! Hugs, Tricia

[NanaJoni]

I will be thinking of you and keeping you in prayer - you are such an inspiration to all of us.

[ElaineM]

Making an appointment with your neighbor is a great idea.
Sometimes it is good to consult other doctors and other specialists.
I always believed one doctor cannot know everything about everything. It is humanly impossible. I have often put pieces of a puzzle together by talking to several people.
You are right. It might be time to take another direction in your health care and find another way to get rid of some cancer.
I hope you feel better. Do you think the coughing is bronchitis or some kind of allergy causing post nasal drip? Many things can cause nausea. If you have a primary care doctor go to see that person too. In the meantime take care, continue to pray, enjoy your family, get a little exercise and eat healthy food. I will be thinking of you and wishing you the best.

[Karen Wheel]

I don't have any advise but wanted to say I always like your posts and admire your spunk! Hang in there and keep us up to date on the progress.
:-) Karen

[Barbara H.]

Hi Tricia,
Has your Doctor suggested taking Tykerb with Hercpetin. It has been an easy drug for me and I did not think that Navelbine was an easy drug. I know that Tykerb can be be difficult for some, but my oncologist has told me that most of his patients tolerate it well.
Thinking of you,
Barbara H.

[Patb]

I have nothing to add to all the good advice but my
prayers and healing thoughts are headed your way
May your days be easy so you can spend your time
on your next plan. Wishing you the best.
patb

[Joan M]

Tricia,

Lucky you that you're neighbor is a radiation oncologist. He will be able to explain RFA to you. People who specialize specifically in RFA are interventional radiologists. They use CT scans to guide the probe. Your neighbor will know who you can speak with if you want to get additional information.

I believe in turning over as many rocks as possible. Although some of them might not be the right treatment it's worth checking them out.

Sending you good vibes and hoping you'll feel better soon.

Joan

[Adriana Mangus]

Hi Tricia,

Just wanted to say that I've read the advice and nice comments left by our sisters on this site and you are in good "hands". Making the appointment with your neighbor friend is a terrific idea.

Thank you so much for keeping us posted.

Hugs,

Love,

Adriana