One year today

Noni

It has been one year since I received the news that my cancer had spread. I kinda miss those first days when I was dazed and confused and not fully aware of what was to come.

I was so hopeful on my first day of chemotherapy, thinking the treatment would help keep me alive for 20 years, like my MO told me. But then I was crushed when that treatment failed and each and every ct scan since has showed progression.

I have really good days but also some pretty crappy ones. I've lost 60 lbs and while I love fitting into my skinny clothes, I wish my body felt well enough to enjoy its new size.

My lungs are filled with tumors so coughing and breathing are my number one challenges. I'm great at sitting and listening tho, and enjoy going places and observing.

This last year has been a gift of sorts in the way I view my world and my priorities. I've done quite a bit of traveling, visiting friends and family. There are people I've grown closer to and others I've drifted away from.

I have a CT scan coming up next Wednesday. It's my regular 3 month scan, but I've been experiencing pain in my rib and my MO and I both felt something so cross your fingers for me.

All geared up for year two and hope we find the magic combo soon.

blainejennifer

Noni,

My first year sucked. Tamoxifen threw gas onto my bone mets, and I couldn't even get out of bed without preloading pain meds. Finally, my MO shoved me into weekly Taxol, and it stopped the progression, but the second I took a week off, it would come roaring back.

Therapy to therapy, my darling MO has pushed this shit back until, five years on now, I am stable. You will find your magic combo.

Do make sure that you were getting a body weight appropriate dose of Taxol. Some old school Oncs are still not dosing larger ladies at the correct dosage because they fear cardiotoxicity. Just check on that, ok? A disproportionate amount of fat gals (like me!) might have ended up with metastasis because we didn't receive the full brunt of chemo during early stage treatment.

There are so many treatments out there, waiting for you. Have you sent any biopsies off for precision pathology to see if there is a good treatment match? And, just because Tamoxifen didn't work doesn't mean that other anti-hormonal treatments won't. I got 13 months out of Faslodex.

You and your brainy girl have lots of time left!

Jennifer

PattyPeppermint

noni hoping g this is the year you find the magic combo. Congrats !

singlemom1

Hi Noni

I hope this 2nd year is easier for you. I see that you are hormone positive and Hers negative- have you already tried Ibrance?

Bonnie

Noni

Thanks for the responses. Ibrance has been discussed as one of the next options. I've been reading up on as many as I can. I just need something that works!

singlemom1

Noni, have you considered a 2nd opinion? I don't know details of your medical status but hormone treatment with Ibrance is being used very often for hormone positive/hers 2 negative. You may want to review the ibrance thread.

Bonnie

Noni

Well, yesterday's CT scan was a mess. I was admitted to the hospital today. The scan showed pleural effusion which my onc wanted to be taken care of ASAP. But there's also progression in both the size and number of tumors pretty much everywhere.

The most devastating are the compression fractures that seemed to have come out of no where. They went over the report with me and left me a copy of it so I'll be obsessing over it more when my head starts spinning.

Hard day.

MSL

Noni

I'm sorry it's a hard day. And being in the hospital to boot is never fun.

I'm new to this, but have already had 2 operations, many scans, biopsies etc. And the heavy feeling that comes with bad news.

Allthings pass and you will be home soon with your beautiful daughter.

From what I understand, it can take time for the right combination of treatment to be found that works for you. Remember many women in this community faced significant hurdles before they found the approach that did the trick. Keep that faith.

pajim

Noni, I'm so sorry. I have no words of wisdom, but hope you get out of the hospital soon and that you can find a treatment to kick the cancer's b---.

barbe1958

Oh sweetie! You are not alone, we walk this journey beside you. Some are further ahead, some behind but you are never alone. Prayers being sent your way.

Beverly11

You are in my prayers Noni. Keep believing healing is coming. Bev

artistatheart

Yes hang in there Noni. I hope you get sprung before Thanksgiving and that the right Tx turns up for you!

Andi67

Hi Noni,

I am also 49 years old. I don't have a brainy daughter, but I do have two amazing sons and two wonderful step children. I am so sorry to hear about your hard day and being in the hospital. I have been in similar situations....while going through chemo four years ago, I had horrible plural effusions on both lungs. They were so filled with fluid (although not cancerous... that was just my bones and liver...) that I seriously couldn't walk down the hall without gasping for air. I had them drained many times and finally ended up having surgery on both lungs (two surgeries - separately - two weeks in the hospital) ... called Pluerodesis (sp?)...I am sure your doctor has mentioned it. While they were horrible and I was stuck in bed with huge tubes coming out of my ribs, they did the trick, and I haven't had any issues with fluid build up since then. Also, when I was initially diagnosed Stage IV, I had bone mets so wide spread that I also had compression fractures (don't ask me how I was walking around... no idea...) ... some that wouldn't heal on their own and I had another surgery called kyphoplasty which was actually an outpatient surgery and almost immediately relived my pain.

So please do hang in there and don't lose hope. I know it's hard, especially when you are in the hospital... I hope that they can find solutions for you that will bring you some comfort.

Sending good thoughts for healing... XO

Andrea

Sister-Sister

Hello Noni, I've went through Pleural Effusion 2Xs. I have been hospitalized both times, the 1st time, they tried using the Talc procedure and it didn't work. 2nd time being hospitalized I ended up leaving the hospital with a Catheter inserted in my Chest to Drain the Fluid myself. I'm now on Oxygen. Unfortunately, I can't function without it. I was told that my Pleural Effusion happen because I wasn't on my Chemo and my Met That went to my Lung went rogue. I Pray you have a much better outcome. I'm here in Michigan, not sure where you're located, but I have Oxygen and will Travel

Noni

Thank you all for so much knowledge.

I had the fluid drained over the weekend. They pulled 800 ml and discussed all the options, should fluid build up become a regular thing. I'm not against the catheter.

I have five new tumors in my lungs, four spots on my spine and three on my hips. My largest lung tumor has positioned itself so its impeding the flow of blood, so while the RO is taking care of the spine next week, he's also going to radiate the tumor and hopefully it will help with breathing.

They sent me home with oxygen and I'm to be on it all the time. I'd be more okay with this if I was actually breathing better, but I don't see much of difference. Obviously I will keep it up and hope things will get better.

I have 15 sessions of radiation and then I move on to Doxil. I hope that's my lucky charm.

MSL

It's great that you're home with your family Noni and we're all sending you the most positive thoughts for the new treatment