View Full Version : doctor update
07-29-2011, 04:57 AM
Lots of things going on,. I start radiation on my left thigh next Monday - don't know yet if it will be 15 or 20 treatments. I've been having pain the past 3 weeks - on and off. Also my left thigh muscle has atrophied in last few weeks - visibly smaller than right. Onc. Rad. Onc. Ortho surgeon or Rheumatologist, or Physical Therapist - none can tell me what caused that & haven't seen it before in just one limb, I had MRI of thoracic spine to see if nerve issues but nothing points to that. Will have MRI of lumbar soon. The MRI did show lots of tumor in all vertebrae.
My tumor marker blood test was way up two times in a row from 2770 - 4900 this week - means more cancer - the chemo I'm on - halaven - is probably not working any longer. The oncologist is keeping me on the same chemo for a few more weeks until I finish radiation. Usually they don't do both at same time but they think I should do it & it will be safe.
Before I see him again in 3 weeks I'll have scans to see what's going on. PET/CT, MRI of brain, lumbar. Doesn't look good right now. The onc. said I've lost ground - he's usually su positive. It's something I've thought but haven't said out loud.
I've been doing physical therapy to try to regain some strength. The rad. doc. said I should be very cautious due to the thoracic MRI and all the mets. The onc. says he wants me to continue to not lose more strength & he says to ask the ortho doc what restrictions & what it safe. The PT doesn't seem to know (?) I think the fact that it's cancer related has her nervous. I'm going to see if there's someone else there who has had more training in this type of therapy.
Trying not to panic. But I'm really scared now. It seems I haven't had a break in over a year now and new things keep going wrong faster and faster. Wondering if this is the end? I still have fight in me but am so discouraged. Thanks. Pam
07-29-2011, 09:41 AM
Sorry to hear all the hurdles you've been through. I am sure the radiation will help and you will feel fine soon. I am sending you positive thoughts and hope you feel better soon. Love, Grace
07-29-2011, 09:52 AM
Count me in your cheering section. I am still here cheering for you and keeping my fingers crossed that things will turn around for you soon. Remember there are several targeted drugs that might be approved very soon. I heard that Genetech is applying for Petuzumab approval soon. So, if you can hang in there and keep putting one foot in front of the other for a while longer good things will be available for you soon. Take good care of yourself.
07-29-2011, 11:15 AM
So sorry you're having a hard time again.You are such a fighter and will continue to be I just know it. As Elaine said more targeted treatments are coming. Please hang on, you have inspired so many for so long, me included!
07-29-2011, 11:47 AM
Hi Pam Been following your progress and so sorry this battle seems constant for you. I am hoping you can "regain" that lost ground your oncology spoke about. Pam you are truly inspiring with your fight and you are also letting out your emotions and how you feel about being scared. I will be thinking about you and sending a prayer for you Pam, you keep strong as hard as that probably seems right now and hopefully there can be uplifting news coming your way soon. Best wishes Lois
07-29-2011, 12:17 PM
Dear Pam -
As always you have my best wishes, prayers and positive vibes going out for a better result.
I had high hopes for the Halaven having better control of your cancer.
I am thinking that exercise on floor mat or bed would be good type for you. If floor is too difficult in getting up and down, then your bed should be a good safe place. Thinking that you need to avoid a fall so prone position is appropriate.
There are "core exercises" that are good either on your front or back. You can do the bicycle in the air type on your back. This is good for circulation as well.
Do you have some 2 or 3 pound weights for your arms and upper body. The excercises with these can be done seated.
Also, don't forget the Sit and Be Fit lady on TV. That is better than nothing. My mom likes that show and easy workout.
Can't imagine your PT would not be thinking along the above lines.
07-29-2011, 12:36 PM
Sorry to hear you are going thru this again Pam as you are one of my hero's on this site, you are such a fighter. May God's Blessings be upon you. I know things will get better, they just have to, enough is enough, Jeanette
07-29-2011, 12:52 PM
Sorry to hear about your additional problems. I'm a physical therapist assistant. Your PT may be concerned with any bone mets, it puts you at more risk for fractures, so any type of weight bearing exercise could put more strain on the bones. Vertebrae are particularly prone to compression fractures when they get weakened. Pool exercises take that strain off if your PT clinic has one. Don't get too worried about your PT being worried. Cancer is one of those precautions that is diven into our heads as students that we have to be so careful about. We don't want to cause any harm to our patients so when cancer is involved it just makes us more cautious. There are PT's that do specialize in cancer treatment mostly with lymphadema but tend to be more up to date with types and precautions if your PT is uncertain as how to progress you through this stage.
Hope you start to take a turn for the better soon.
07-29-2011, 01:11 PM
I was hoping to see a better post from you. I hope things will get better. Keep fighting; you are inspirinig me to do the same. Sending prayers and hugs your way.
07-29-2011, 02:40 PM
My thoughts are with you and I feel your concern. You have already received some good suggestions here. I notice that you have not had TDM-1. It was the drug that put my bone mets into remission. I wish there were a way for you to receive it. In spite of your frustration with all these treatments, my hope for you is that the therapies your oncologist suggests will keep you stable enough until more of the targeted therapies become available to you. You courage is also an inspiration to me. I always look forward to your posts.
Mary Anne in TX
07-29-2011, 02:55 PM
Reaching my hand across the wide space between you and me here in TX, but sending much love, encouragement and comfort your way. You are so amazing and continue to inspire me with your battle-wise decisions and efforts. I'm pulling for you to have some good news and some good loving hands to guide you and love you as you make each decision. Much love to you, girl! ma
07-29-2011, 03:06 PM
My heart goes out to you, Pam. I'm sorry you are going through this. I just lifted you in prayer.
07-29-2011, 03:48 PM
Sadly no advice Pam but holding you close in my thoughts, stay as strong as you always are!
07-29-2011, 03:59 PM
I was just swimming and wonder if that might be available to you? Water therapy is thought to be a gentle way to get exerecise. I, too, always look forward to your posts because you maintain a good attitude despite set backs. You are an inspiration. Keep the faith.
07-29-2011, 04:02 PM
Pam, Sending prayers out to you as well. Ceesun
Pam I am sending big hugs and prayers from Canada. Try to keep your spirits up, hopefully a new plan of attack will start soon for you.
all the best
07-29-2011, 08:21 PM
I am so glad you posted. I know it was with heavy heart you shared what is happening. As I read your signature I can not believe all the years you have been fighting! You are an amazing woman, blazing the trail through for all of us. Right now I am praying for peace, clarity, and joy. Know that we are with you every step of the way. Hugs from Texas!
07-29-2011, 08:37 PM
Hi Pam - you are such a special "warrior" and I admire your determination and you do it all with such grace. Although it made me feel sad for you, it was good you shared your deepest thoughts and fears with us. We would all feel what you expressed to us. For now, we will just say ~ one day at a time! That is more than enough.
I, too, just lifted you upnin prayer.
God's peace I pray for you tonight,
07-30-2011, 03:07 AM
Keep strong keep taking care of yourself whichever way is best and don't lose the faith - always more drugs on the horizon which isn't as far away as it seems at times.
Sending best wishes from far away
07-30-2011, 05:28 AM
Sorry to hear things are so difficult at present Pam. I am thinking of you and hoping for an easier time for you ahead,
07-30-2011, 06:15 AM
Pam...so sorry to read of yet another setback. Hoping the radiation will gain control of the mets....was hoping for better results from the Halaven for you....any chance you can still get into a TDM-1 trial anywhere? As always you are in my prayers....stay strong and get this new hurdle behind you. Don't get overwhelmed, focus on healing.
Sending a big hug.
Pam, Gods blessingts to you and your family. I will pray for all of you. The first year I was dx I spent fearing the worst and all I fear now is wasting another day. ( admittedly I started an anti-dep. it has helped me to get my happy back and have a much better attitude), I'm sure I can do it on my own now. You leave me in absolute awe reading your sig. You inspire me to be strong everyday no matter what! You already have the attitude and strength.
07-31-2011, 06:55 AM
I am also praying for you, Pam, and sending a gentle cyber hug.
07-31-2011, 07:21 AM
You are so special...so incredibly special and brave. I, like everyone else, was hoping to read good news when I was opening your post. I am so sorry for the struggles you are facing. Praying that the radiation is successful.
I hope you feel all the love and prayers coming your way. You are such a warrior.
Love and peace and healing to you, Pam.
07-31-2011, 08:05 AM
I was pleased to read that they are able to radiate the bone mets, is there a chance that will bring down your markers?
I've been thinking about TDM-1 for you, but not certain why that wasn't an option. There are many on the site that would love to help you navigate treatment. (I am thinking Denver) Could you ask your Onc about that option?
Sending you an extra dose of strength and of course a big hug for comfort.
07-31-2011, 11:34 AM
I am so sorry that you have so very much going on! Hopefully, the radiation will help and give you some peace of mind.
I agree with Lori. Have you asked about TDM-1? I just switched to the onc. that Brenda see's here in Denver and love that man. He is so thourough and knowledgeable. I would be glad to help in any way possible if you can get into the EAP.
Please let us know how things are going and know you are always in my thoughts and prayers and your strength helps to strenghten me.
Take care and be kind to yourself.
07-31-2011, 11:39 AM
For exercise - try to open your fingers and close them repeatedly. Do the same with your toes (bend and wiggle while tapping) It's a safe and effective exercise. You can do it in any position: standing, sitting, or while lying in bed.
Waiting for your next update...
08-01-2011, 03:19 PM
1 down 19 to go on rads. As you who have done them know it's exhausting just to have to go everyday. I'm still feeling down with all this new news. The orthopedic surgeon wants m to come for a consult on the back MRI on Wed. More bad news I'm guessing. I just can't get my mind to stop being occupied with this subject - I'm obsessing on it which I know doesn't help.
Thank you all for your suggestions for safe exercise. suggestions about t-dm1 - I checked on line again today - nothing in MN. I don't have the funds to fly somewhere for txs out of state. Any update on FDA approval date? And thank you all for all your prayers and support. Pam
08-01-2011, 04:03 PM
I was away for a few days just now returning to the Her2 site. I am truly saddened to see things are still a terribly rough go for you. It is so unfair that this scourge will not relent a bit so you can catch your breath. Sending prayers that the Halaven kicks back in gear and knocks that @%*& back to hell where it belongs.
08-01-2011, 08:46 PM
I am keeping you in my thoughts and prayers. Praying for new avenues of response.
Pam, You are in my prayers also, along with your family!
08-01-2011, 10:29 PM
Dear Pam. I am sorry you are fighting pain again.I hope the radiation will help. I also hope Halaven is working and that your onc will come up with another option if you cannot get TDM1.. I am sending hugs. Michka
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