Jump to content

Tough Results


SandraL

Recommended Posts

Well I got some pretty devastating results from my PET scan last Thursday and am now just crawling out of my despair and have found the courage to share and hopefully get some advice from you good people. I haven't shared the news with my kids (age 11 and 13) yet as just couldn't do that to them on Mother's Day weekend. I need to tell them soon though as I am pulling away from work.

Basically, I have gone from NED to Stage 4 in less than 2 months! I was SO positive, and took a very hard fall when I digested this news.

I have been back at work since the end of January. Had 2 clean CT's in Feb and March. And then asked for PET scan as well. Just to be sure. Since mid Feb or started to have lower back pain which has progressively gotten worse (you know the kind of thing that just sneaks up on you and then you all of a sudden realize what kind of pain you are really in). I even skiid in early March, and the skiing was fine, it was just the getting out of a chair at the end of the day that bothered me. I had told nurse and med onc about it as well...think I convinced them and myself I had pulled something and I actually thought it was just from going back to work and sitting in desk, computer, etc. I had read a few posts here re lower back pain that did start to get me a bit worried.

Anyhow, pet scan came back with mets in lower back. I guess the nasty thing got out before my lymph nodes were cleared. I was participating in a clinical trial and that is for sure off now. Now looking at plan for radiation on back, and then 2nd line chemo. Med onc is strategizing re chemo. Here are drugs being suggested (forgive spelling)

1) Altima

2) Dozican (taxol??)

3) Veneralbine

4) Tarceva

She also explained there is a clinical trial (sentanob..think I really messed that one up) at another clinic that she is looking into first. Basically she explained that she wants to put me on drug first that might be most successful and one that will leave most options open for future. So Tarceca, for example, being a later option as limits further clinical trials later.

Does anybody have any advice or experience on chemo options?

Is it still promsing that my lungs and lymph nodes are clear (except for continued tricky part re pleural effusion)?

And how treatable are mets in spine? Anyone been through that? Can that be cleared as well? I am in major pain (relieved only slightly my morpheine at the moment). I hope they call soon re radiation as I am told that should help with pain.

Looking for inspiration and hope. Thanks for listening.

Sandra

Link to comment
Share on other sites

sorenafib is probably the name you are thinking of first.

Alimta is the first one!

Thats the easy one!

I can give you a link for canadian trials;

1)http://www.canadatrials.com/index.php

2) http://www.cancer.ca/ccs/internet/stand ... en,00.html

Tarcava is more of a mainteneace drug than a curative drug, so I would reccomend holding off on that one, but I am also not the doctor so..

There have been a lot of great results with the others. Deb had good luck with Vinorelbine or Navy Bean as it is sometimes called!! :wink:

If I can help with anything let me know I am trying to locate some postive info on Sorenafib. Because it is new I can not find too much right now though!

Hugs and Prayers and Kep me psoted

If I can find anything out I will post it up for You here!

Link to comment
Share on other sites

Sandra, I can only imagine how you must feel, but I think I have a pretty good idea. I'm stage IIIb myself and doing well so far with presumably lots of bright days ahead. I too have some lower back pain, but I've had a little discomfort in that area for at least 30 years, and the fact that it's a little worse now I attribute to age...sounds familiar, I'm sure.

Have you ever corresponded with Dr. West at the former OncTalk? That site has now been folded into GRACE (Global Resource for Advancing Cancer Education) at cancergrace.org. A second oncologist who contributes there is Dr. Janessa Laskin, a lung cancer specialist at the British Columbia Cancer Agency in Vancouver, BC. Though they wouldn't be giving medical advice as such, either of them could provide their perspective on the treatment options open to you. Many of us have the same usernames there as here, but I don't recall seeing yours there. The cancergrace.org/forums are getting a good bit of traffic now, but questions are still answered promptly, usually within 24 hours. Aloha,

Ned

Link to comment
Share on other sites

I'm so sorry you've had to deal with this bad news--especially over the Mother's Day weekend.

When my mom was first diagnosed she had mets to the spine. They did three weeks of radiation and those babies have been gone for 15 months! The chemo will likely be to take out any microscopic cells that are floating around. They can likely get you back NED or stable again. That will be my prayer for you.

Susan

Link to comment
Share on other sites

Oh, Sandra! I'm so sorry!

You have really been there for me since this whole thing began with my Mom, and I thank you for that from the bottom of my heart.

I am sending up prayers for you, that you find the right treatment and kick this thing's A**!!

((((((HUGS))))))

Linda

Link to comment
Share on other sites

(((Sandra))) ... I am so sorry for the recent test results. My sister-in-law had radiation for pain relief and that helped her immensely (and rather quickly).

I can't begin to imagine how difficult this is for you and your family and I will keep you all in my thoughts and prayers.

Ned offered great advice on contacting Dr. West - he and his team are a wealth of information and perhaps can guide you regarding a plan of action.

Please keep us posted,

Linda

Link to comment
Share on other sites

I'm so sorry you had to get this news. I, too, just got back a bad PET scan result (but mine was only increase in size of tumor and new mets to new lymph nodes--no mets to bones, brain, etc. yet); and today my oncologist and I agreed to try Alimta (my first infusion will be this Wednesday).

If we both end up on Alimta at same time, maybe we can hold hands on this trip?

Sending mucho hugs and best wishes your way,

Carole

Link to comment
Share on other sites

Sandra,

I'm so sorry to hear your news. I too have lumbar spine mets. For me the back pain, which was horrible, got much much better after just one chemo treatment. After chemo, avastin, and tarceva most of my bone mets have cleared up (2 to go). I'm sending good healing vibes your way.

Anne

Link to comment
Share on other sites

(((Sandra)))

I'm sorry to read this news..what a shock to you! Time to readjust and get back into fighting mode... Use Patti B's bat, I'll lend you a hammer and an axe too if you need it- we are all here for you to lean on. Keep us posted on your treatment plan and I am saying a prayer that these are small hurdles and that you will be cancerfree again soon.

(((hug)))

Link to comment
Share on other sites

Sandra,

I'm very sorry for the set back and know exactly how you feel. I can give you my experience on all four chemos which I had and had great results with all of them. Of course everyone is different and reacts differently. Work closely with you doctor(s) they know your situation the best and what is best for you. Keep us posted and as long as there is life there is hope!

Hope this helps. Prayers for the best.

Rich

1) Alimta-- Only problem I was fatigued, made me very tired.

2) Taxol (Paclitaxel)-- Only problem I had was Neuropathy in my feet and hands and still have it to this day. Note: Take Gabapentin for the Neuropathy and one also can take B6 or B12.

3) Veneralbine (Navelbine)-- No side effects. They bush it through and takes about 5 or ten minutes (the chemo itself) and the whole process about 30 minutes.

4) Tarceva-- Comes in pill form and take it once a day. Most start out at 150MG and can be adjusted for side effects etc. Developed the rash at first but only had it for 2 or 3 months and went away on it's own. Developed diarrhea, adjusted it from 150MG to 100MG and that went away. Note: If you do take it do not eat or drink grapefruit and stay out of direct sunlight. A good moisturizing for the rash helps if one does develop it.

Link to comment
Share on other sites

#^%@!!!! I wish I could offer more than a sympathetic ear....I have a big bat, too, and TONS of prayers!!! BOTH on the way... I just KNOW you will be hanging out with NED again, SOON!!!! ((((HUGS))))

Yours in HOPE!

Stacey

Link to comment
Share on other sites

Sandra

I am so sorry I missed this post and so so sorry about your news.

I had three different lesions on my spine - and had radiation in January and February of last year - I am now NED. I pray that you get the same results.

Peace

Janet

Link to comment
Share on other sites

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.

Guest
Reply to this topic...

×   Pasted as rich text.   Restore formatting

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.

×
×
  • Create New...

Important Information

By using this site, you agree to our Terms of Use.