Lung mets?

camul · September 2010

3 weeks ago my chest felt like bronchitis, went to gp. Took a chest xray and blood work. Was sent to hospital to have a ct for possible blood clot, no clot but a nodule on the right lung. Was told to see my oncologist and that I must have pulled a muscle. Now, I thought I had a bladder infection, so went today to the oncologist. To kill 2 birds with one stone. No UTI, pain in back and bladder suspicious, he is very concerned with the nodule.

Possible mets of the lungs, with a twist with the bladder. Had a resection of the bladder last year for probable bladder cancer, but it came back atypical, but not cancer. Will do a PET Scan on the 15th of the full body looking for hot spots. Had the thyroid out for atypical tumors/nodules in November, but it ended up not. Now have to wait another week to learn the outcome, this is the first time I have really felt my Doctor being really concerned with a development. The growth was not there 8 months ago when I had a CT Scan.

I have had all day to digest this, and don't really feel anything. I was scared to go to the Dr. after the CT Scan which is why it took 3 weeks and a possible bladder infection. I really expected him to say we would watch it for 3 months, was surprised but not shocked when he said we nn to get a pet scan right away.

Since having breast cancer in 2002, I feel like I have been chasing this thing that I can't quite catch. I feel like it has been a search and destroy mission. My immune system is shot, my joints hurt, my back hurts.

Does it ever get better? It hasnt stopped me from living, I am just living with constant low level pain. I have never felt like I have beaten bc. I feel very fortunate to be here, I graduated from college 2 years ago, I have never had to stop working, I just don't know how much more I can do. I am just really tired. Does anyone else feel this way?

camul · September 2010

Had a masectomy, no node involvement and was told it was low risk at onset. Thought that those were all good signs! Goes to show, this disease seems to take a path of its own.

barbe1958 · September 2010

{{{{{{{{{{{{{{{{{{{{{{{{{{ hugz }}}}}}}}}}}}}}}}}}}}}

camul · September 2010

I had the PET scan, got the results today. It is bone mets and quite extensive. The outcome is not good. I will have a bone biopsy either Today or Monday, then will meet with my onco next Friday. I will go to the City of Hope for a second opinion, then treatment.

I cant stop crying, and I am not a crier.

I am so scared. The hardest part was telling my boys. I never imagined.... I am not ready.

camul · September 2010

Barbie thank you for the hugs, I cant even begin to tell you how much support I need from someone who knows how this feels.

barbe1958 · September 2010

Ah Sweetie, there are so many sisters here who have walked the walk before you! Check out the forums and find one that matches your needs and jump right in. Someone will walk you through it all, holding your hand the entire time. You are in the right place.

{{{{{{{{{{{{{{{{{{{ HUGZ (bigger ones) }}}}}}}}}}}}}}}}}}}

lovemyfamilysomuch · September 2010

Sending light, love and support to you sweetie! xo

camul · September 2010

Thank you. I forgot how hard the nights can be. I had a panic attack when my hip hurt too bad to roll over this morning. The pain has been bad for weeks but I don't know if it is worse because I know what it is from or because it is getting worse. I know that to sleep I am going to need to get pain meds and I dont want to start on them so soon. Has anyone used accupuncture or anything else for the pain that has given any release. I just get so sick from pain medication. Will a joint help? I am willing to give almost anything a shot.

Thank God for all of you on this site!

LRM216 · September 2010

Camul:

Please remember that there are many gals on these and other boards with extensive bone mets that got great pain relief once their treatments began (i.e., inspire.com). There is a gal on the Stage IV forum here that celebrated her 17th or 18th year with bone mets. Many gals, with lung nodules have also seen them clear up entirely on treatment. There is so much hope, but this is the darkest time for you and I feel so badly for the panic and fear you are facing right now. Hang strong, Camul, push for treatment to begin as soon as possible and BREATHE. I pray you have some ativan or xanax - if not - get it asap.

We are here for you - lots of arms to hold you and hands to push you forward.

Linda

barbe1958 · September 2010

Camul, the pain meds are started very low to give you relief so you can heal. There is no point being in pain as your quality of life goes downhill. Get yourself hooked up with a pain management team to help you through this. They can build up your drugs as you need them and then bring you down and off them as the mets are treated.

Alpal · September 2010

Awww, Camul - welcome to our club. Just wanted to let you know that I was diagosed over 2 years ago, with extensive bone mets (too many to count). Most didn't hurt but some were very painful. After 2 cycles (every 3 weeks) of TC I was pain free! I now start back on Percocet when one flares up, but have never been in constant pain since. I don't know how old you are, but I'm 63 years old. If this old lady can handle this, so can you!. Please come on over to the Stage IV forum for love and support.

camul · September 2010

Thank you all. I am now taking a xanex along with an ibuprophen before I go to bed and I have had 2 good nights sleep, which this alone is making me stronger. The worst part about pain meds is anything opiate based keeps me hugging the throne for a good 2 hours. I see my onco on the 29th and then I can get something more. You are all such an inspiration.

Yesterday, a very good friend and her daughter took me to lunch in the mountains and we walked around a beautiful lake, the weather was amazing and we laughed and talked about everything from cancer to just normal life. It reminded me to live, live, live.

My name is Carol and I am 52 years old I live in Salt Lake City!

LRM216 · September 2010

Carol,

Sometimes, some of us just sail along, and some of us don't - that brick wall is hit again. When one of us posts that we got more bad news, it strikes a great fear in each and every one of us, as there but for the grace of God go any of us- at any time. Please know that you CAN do this, and that all of us are here for you, every step of the way. God speed.

Linda

camul · September 2010

Alpal, I am hoping that something like that works for me to alleviate the pain. The constant pain certainly has been an issue for a while, I just assumed it was from arthritis.

Today I got Tramadol, I cant take the ibuprofin for a week because of the bone biopsy. I will try it tonight. As loving and caring as everyone is, still would happier if I wasn't part of this club Laughing , but I am here and I so far I couldn't ask for a better group!

Carol

LRM216 · September 2010

Carol:

Just letting you know I'm thinking about you. Is the tramadol working?

Linda

camul · September 2010

Linda:

Yes, it does without getting sick. I am sure that part of it is in not knowing, and frankly, being scared. I also think that I need to get some counseling for myself and immediate family. The waiting is very hard.

Thank you for thinking of me. I also will pray for everyone here. Each of our fights are different, but I dont think there is any one fight that is easier than another.

Carol

LRM216 · September 2010

Hi Carol:

Good to hear from you and glad the Tramadol is working. Many gals on board here have or had counselors and they were very helpful. You do whatever feels good for you. Yes, you are correct - each of our fights are different, and each is subject to change in a blink of any eye. That is what is so frightening about this beast of a disease. I hate this freaking disease with a passion. Please take care this weekend, and I will keep you in my prayers and thoughts.

Linda

camul · October 2010

Got the results started on Zometa and Tamoxifin. Will start radiation on Tuesday. Hopefully that will allow me to sit so I can go back to work! I am going stir crazy and need my job and benefits! Today I have an MRI on the brain, hopefully that will be clear, I need one piece of good news. No chemo for now!

Shock is off so it is time to do what I need to so I can continue living. Back to hot flashes, but I will take them if it means slowing the growth!

Have a great weekend everyone!

LRM216 · October 2010

Camul:

Between your great attitude and our cheering you on - we are on our way to success!

chainsawz · October 2010

Camul - I missed this post until now, but you are definitely not alone! You will find your "sea legs" and get back to daily life! I was dx stage iv off the bat 2 years ago after a bmx with clear nodes. Then I got brain mets last year.....no problemo! I had them zapped and went to work the next day. My brain has been clear and I still have lung mets, but trucking along working full time without missing a beat. You sound like a tough cookie who is going to give cancer a haaaaard time :> lisa

Leah_S · October 2010

Carol, I'm on similar treatment (Femara and Aredia for me) and find the treatement quite gentle compared to the chemo I had before. I hope that, for you, it's an easy regimen.

Best of luck.

Leah

carol1949 · October 2010

Might I suggest a book called Through Rose Colored Glasses by Donna Deegan... who is a 3 x bc survivor w/ mets to lung... I think is may give you a bit of inspiration. Don't let go of the hope.

camul · October 2010

Hi, everyone, thanks for all the encouragement, it has been a long week. Started radiation on Tuesday, 3 days down. Tried the fentenal patch on Monday night, way too strong, lost most of Tuesday, went back to Ibuprofin 800, works the best for me right now. Brain MRI showed no mets there, but found other lesions, will know more on that on the 22nd of October! These are new lesions since March, so we need to look into that.

Leah, you are right, this is very gentle compared to the cytoxin/rubi combo I had the first round. Now I am just hoping that the radiation will allow me to move around with less pain, and allow me to live better. You all are a great source of support, and know that I wish all the best for each of you!

Carol

LRM216 · October 2010

We'll be tagging along with you, Camul, for sure. We're here for you.

Linda

camul · November 2010

Here I am again! The beast has shown up again, now to the skin while on Tamoxifen. So I am looking at trials. If anyone has had an immune vaccine therapy, can you share it with me. I am also posting on the stage iv site. I am scheduled to start chemo in less than 3 weeks and am looking for a vaccine ahead of it.

Thanks Everyone, and thanks Linda for being so positive.

Carol

Suzybelle · November 2010

Camul, I don't have any wisdom, just wanted you to know that I am praying for you and wishing you well.

BaseballFan · November 2010

Look into the breast cancer vaccine trial at Johns Hopkins in Baltimore. There are many ladies participating in this right now. Look at the thread titled CONSIDER PHASE II BC VACCINE TRIAL.

jenilo · November 2010

I know how your feeling. I was recently diagnosed this June with stage IV , I can not wake up or go to bed without it on my mind. Since 2005 ive been continually fighting the damn thing, I know it will come back its just a matter of when, its getting shorter inbetween times. I have a 11yr old daughter and constantly worry for her and the time I may not have to spend in our life time together .She must be so sick of having to hear and deal with this at such a young age. She keeps on saying why can I not have a normal mum. Sad very sad. My thoughts are with you . Smile

camul · December 2010

I just got back from Johns Hopkins. Had a second opinion and to find out about the trial. I am waiting for the results. It was a long trip. Left Tuesday and came back on Thursday, and very cold. I was impressed with the hospital and everything they have to offer. Once Dr. Emens makes her recommendation, then I have to decide if it is for me. Hopefully, my oncologist will help me make that decision.

She told me that the last one with my insurance was refused, so they are appealing which could take a couple of months. My onco wanted to start chemo in November, but that will knock me out of any possibility of taking part in the trial. So.... how long can I wait if the cancer is still growing??? and with the trial, I would have to be in Baltimore for 12 days, the first go, 10 the second, and 10 days the 3rd, plus all the co-pays, travel and lodging expenses..... from a financial standpoint difficult.

I have been off work for 3 months and my doctor has written me off permanantly.... so I think I have to make some decisions......

Going to spend a week with family in Southern California, can't wait!

So many questions with no concrete answers! Just staying positive! I thank God everyday for my beautiful boys who are so supportive.

Thanks Everyone and Merry Christmas and Happy Holidays to all of you. You are all included in my prayers!

cyalata · December 2010

Sometimes a setback is a setup for a comeback! Stay positive & thank God for how far the medical world has come with treatments. Southern CA sounds like the perfect remedy!

Lung mets?

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