Going from stage 2A to stage 4

Raven, pleural effusion led to my first procedure with MBC. Lots of trouble breathing etc. My diagnosis came from the pleural fluid. I had it drained (thoracentesis) once on my left lung and three times on my right. After the second time on the right they did pleurodesis on the right lung. The thorcentesis isn't bad and the relief is nearly immediate. I sat up and leaned slightly on a pillow on a table. They numbed the spot and put the needle in, guided by an xray. The fluid drains (is drawn) into a large graduated bottle for measuring the amount. I was a little sore afterward but nothing terrible.

The pleurodesis was done under general anesthesia so I was really sore at the incision,naturally. You may not ever need that.

Serb4-So sorry to hear about your pleural effusion. I had that when I was first diagnosed 6 years ago. I was having trouble breathing. They did an xray and ultrasound. They only saw a little fluid in my right lung (where my first lung mets were). I also had a thoracentisis. The numbing shots hurt, but putting the tube in was worse. Once it was in and draining, it was fine. At the end they had me look at the bottle the filled. It was almost a liter of yellow fluid. They couldn't believe that was all in there from the look of the ultrasound. Afterwards, as I walked out, I tried talking and got a little pain in my chest. They said that would last a couple of days, it was my lung inflating itself. It was better after a couple of days. I felt so much better afterwards. Being able to breathe again. I haven't had to have it done again (fingers crossed).

I hope you are better soon!

Lynne

Oh Raven,

I'm so sorry that you are going through all of this! Big Hugs! It is so unfair! It is good to get a second opinion (I always go to Dana Farber in Boston, when a treatment stops working). The 2 oncolgists I have have always agreed on the same treatment, except once. I hope they can find something to help you. Especially your breathing. Nothing worse than not being able to breathe. Kick something, hit something, yell at the top of your lungs (I have done all of these!). It makes me feel a little better!

Yes your 10 yr old needs you, as does the rest of the family. Same here, 4 adult kids, husband, 3 grandkids, those are who I keep fighting for. I'm on my 6th different treatment, and intend on going through all the ones available, then all the clinical trials too. I'm going to do it until I can't anymore. I want to live! I question God too. I only go to church Christmas and Easter, and I pray sometimes. I can understand not believing anymore. I feel that way too a lot. Why would he do this to us and not rapists, child molesters, murderers, etc. Why does this disease happen to good people? I don't know if we'll ever find out.

Love

Lynne

Raven, I am worried about you. Where do you live? Maybe someone on this Forum knows a team of doctors that can help you. I think getting a second opinion is a great thing. I am praying for you. Don't give up. Just hang in there. It will get better.

Mimi

Raven, I'm sorry for that complication. I don t know how to answer. At the time I was going through chemo I was too "out of it" to know. I know they took blood from my port each time and we had to wait 45 min. to an hour for the lab results then they'd start the chemo. I can't believe I didn't ask more questions but I really was physically frail at least at first. Now, I ask about my liver every time I see the onc, which is about every other month. He always says my numbers are fine. If I remember, I'll ask him what he was looking at before the taxol treatments. All the best to you as you're working on getting the right treatment plan under way.

Raven, think of your trouble as only chronic and not terminal. It really is that these days, set yourself a life goal 30-40 years in the future and your body may listen to your mind. We may have squeaky wheels but miles to go.

Best w

Hi Raven,

Glad to hear from you! I just let my hair fall out as well. No shaving. My hair was to my waist. I knew Taxotere was going to make me lose it (first treatment I had to make me lose it, after 13 years), so I cut it to my shoulders, and dyed it for the first time in my 56 years. I went blonde (from light brown) with pink highlights. Most of it fell out after 2 weeks. Then it slowly fell out. After a year, I have fuzz on the sides and back, but the front and top are down to the skin. I have only worn my wig 5 times. It doesn't look like me. I always wore my hair back in a pony tail or braid. This one has bangs (only did that once, and grew it back to one length, easier with curly hair) and I'm constantly moving them out of my face (I didn't like the wigs without the bangs either, I really didn't like any of the 20+ I tried on). I usually wear scarves or hats. I'm not sure what I'm wearing for our nephew's wedding, in a month. I'll probably start with the wig, and after, when my head starts cooking (it's so hot), I'll switch to a scarf or hat. I have to figure out if I have any that will match the dress. I use baby shampoo every other day on my head. Just a tiny bit. Nothing to comb for me.

My cancer markers have been going up. I had a brain MRI on Tuesday, because I was having some language issues, twitching, and a headache off and on. It came back normal, thankfully. I am having my scans a month early though (in two weeks) due to the tumor markers jumping up so high. Glad your's are going down as well as your liver counts!

The steroids, certainly do make me angry too. I also don't sleep much on them, so that just aggravates it all. Thankfully, tomorrow will be the last day of this round of steroids. My family knows when to avoid me, when I'm on them for a week.

Live one day at a time. If you are feeling well, do it! That's my motto. I've had to miss a few get togethers, but not many. Just let it go. Don't sweat the small stuff. I've found that's been working for me.

Hugs!

Lynne

Hi Raven dear,

I read all your posts and I am really mad about all those treated you like annoying fantasy patient. Anyway since this journey began........ I personally take antidepressants Effexor 150mg every morning and Seroquel 25mg every night for a good night sleep which is very important for my psychology.

I get every three months Ct scans and MRI scans , never pet scans.

Be patient and try to take care of your self only. I had to work hard to understand that this period of my life I owe to myself to be the center of my universe.

You are in my prayers

Len

Hi Raven, I have chest wall involvement. I could barely breathe in Jan. Had three thoracentesis (1 left and 2 right) and then had pleurodesis on right lung. Was on oxygen 24/7 for months. Could not lean back or recline at all. Gradually improved during ten weeks of taxol. Started Ibrance same week as last chemo and breathing got better more quickly. Now I'm mostly off oxygen but I check oximeter often. Can walk for exercise now, if on level ground and not hot, humid weather. I walk inside if outside is too uncomfortable. I can climb one flight of stairs if I go slowly but inclines are still a challenge.

I have bone scan and CT scans of chest and abdomen about every three months. I go next week and I'm interested to see how the Ibrance is doing. Fingers crossed!

I have moderate (sometimes bad) pain from bone mets and really awful pain from neuropathy in my right hand. I take two reg. strength tylenol at bed time. My doctor said that dose is fine even with my liver mets. I sometimes take a 1.5 mg melatonin to help me sleep. I did try tramadol that he prescribed but hated it and only took two tablets. It made me feel terrible and it didn't even help with the pain.

Hang in there. It will get better.

Hi Raven, I was stage iv from the very beginning. Here's how it unfolded. Last summer I started having slight SOB and went to my doctor thinking I had mild asthma and needed an inhaler. (Over the years, I had needed an inhaler for short periods of time before this when getting over pneumonia,bronchitis, etc, so it wasn't a new thing, we all thought.) It helped a bit but not completely so we tried a few other things. In Sept. they sent me to an asthma and allergy specialist. There we tried different medicines, each with a time period of a few weeks to see if helpful. I also started allergy shots twice a week after allergy testing. I actually got a bit better with some of the shots for a little while but eventually I just kept getting worse and so ended up at E.R. in Jan. After xrays and CT they knew it was MBC. (Then path report on pleural effusion fluid and biopsy.) After this surprising diagnosis, the patient advocate said the same thing had happened to her mother, MBC masquerading as asthma. I hadn't had a mammogram in a few years but I doubt my tumor would have been seen since it was under the pec muscle and very high up, nearly to my collarbone. Now, I know that I probably had this for a long time with no symptoms that stood out to me until the shortness of breath came along.

Hi Raven,

Here's my story. I was first diagnosed Stage 1 in 2005. I was 43, and it was found on a routine mammogram (my dr nor I did not feel it). I had a lumpectomy, sentinal node biospy, and radiation. I decided to have a complete hysterectomy (get rid of those estrogen ovaries, ER and PR+), after the radiation. Instant menopause, UGH! I was then put on the aramotase inhibitors. I went through them all and tamoxfen too. The side effects were awful, so after 3 1/2 years, I stopped taking them. I continued having mammograms every year. In 2012, I was having back pain. I always had lower back pain,but this was my upper back. I put up with it for months. I also had an annoying cough, but I have asthma, and thought nothing of it. I finally went to my primary, and she put me on predisone for a week. It didn't help. She then sent my for an x-ray. She said I had a compression fracture in on of my vertebrae. She sent me for an MRI. She called with the results that afternoon, in tears. She said I had tuimors in several vertebrae, in my lymph nodes, and a large one in my right lung. I was have sob too, and ended up having a thoracentisis on my right lung. I still have an annoying cough (somedays more than others) and a little shortness of breath, walking up the 13 steps to my second floor, but I still get around. If there is a lot of walking, I bring my wheelchair (usually only on vacations). If I walk or stand for too long a period, I get horrible pain in my back.

Here I am, 6 years and 6 treatments later. It's currently in my spine, lungs, liver, ribs, sternum, clavicle, skull, pelvis and hips. There is no reasoning for when and if it comes back. They tell you 5 years and you're cured. Mine came back after 7 (they think I actually had it for a year, before it was discovered). I just take one day at a time. Some are good, some not so good. I am going to do every treatment they throw at me, for as long as I can tolerate it (I'm sure at the end, I'll say enough!). My family needs me, whether they know it or not. I'm going to continue to fight.

I hope your chemo today went well. I also hope you are breathing better. Hugs!

Lynne

Raven, glad to hear you are feeling better.