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exqualls
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Date Joined Aug 2016
Total Posts : 166
   Posted 3/2/2017 9:54 PM (GMT -7)   
Susie, I'm sorry you've hit a rough patch. I hope the massage was a good first step.

In Florida our weather goes back and forth this time of year like yours does in Texas. It makes it hard to get dressed for the day, that's for sure.

Yes, it is my oncologist having me take high doses of OTC meds for the bone pain. First I was on the prescription Naproxen, and when that didn't work, she said to go to 800 mg acetaminophen or ibuprofen every 8 hours to see if that worked, before they would move on to prescribing any kind of narcotic. I ended up exchanging a couple of after-hours phone calls with the PA in the last couple of nights and she said that the onc wants me to have a bone scan to rule out that the cancer has spread into my bones. Well, this gives me something new to worry about! My bff had a friend with breast cancer which spread to her spine and she died. The girl was a year younger than I am.

Anyway, the bone scan is set for 3/7, so not too far off. It's a nuclear test, so I have to get an IV of some kind of radioactive substance, then wait 3-4 hours and come back and have the scan done, which takes about an hour. If anything "shows up", then more tests will be ordered, which could include CT scan, PET scan, MRI, and biopsy.

All I can think is money money money. I do not believe for a second that my cancer has spread into my bones. I believe that I am having the VERY COMMON reaction to taxol of BONE PAIN, and that I need a narcotic pain reliever to deal with this level of pain.

I'm going to call the doctor tomorrow and beg/demand to get a prescription to at least handle this pain until all the tests they want to do finally rule out bone cancer.

Best of health and positive thoughts to all who are reading.

straydog
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   Posted 3/3/2017 8:32 PM (GMT -7)   
E, I sincerely hope this dr gets off her behind & does what she should do. That is just unacceptable in my opinion. That mentality of hers just really burns me. I am with you, this medication is what is causing the bone pain.

I went for a massage this morning. I had a very good lady, but boy did she earn her money on me. She kept saying I cannot believe how tight your muscles are. It was somewhat painful, but I felt like the end result would be good. I am now rethinking that thought, lol. I feel like someone has taken a baseball bat to me. Earlier this evening tried to lay in the bed, just too sore for that. I am waiting on the temperature to lower out in the hot tub. Once it cools down I plan to go sit in it awhile. In a week or so I plan to go back to this lady. I probably should have done a 30 minute massage instead of an hour.

I am sending positive vibes your way & do hope the dr has done the right thing & called you in something for the pain. Take care.
Susie
Moderator in Chronic Pain & Psoriasis Forums

exqualls
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Date Joined Aug 2016
Total Posts : 166
   Posted 3/6/2017 7:14 PM (GMT -7)   
Susie, I hope that hot tub did the trick and helped you feel not so much beaten by a baseball bat! She must've been VERY thorough to make laying on a bed too painful.

It took several after hours phone calls but the doctor's office finally wrote a script out for (low dose) Vicodin that my husband picked up and that did the trick. One measly pill every six hours and no more pain.

Unfortunately I ended up getting cold/flu symptoms starting Friday night. Saturday was pretty rough. My temperature got up to 100.3 a couple of times. The magic # is 100.4.... all along my onc has said if my temp ever got to 100.4 I have to go straight to the hospital, so thankfully it never got to that. Sunday the fever was gone, but today, "chemo Monday", the other symptoms were still present---cough, runny nose, watery eyes, general achiness (not in the bones, though), and so when I went for my chemo she could not give it to me, we have to skip this week. I am on such a tight schedule. I had ONE WEEK to spare to finish chemo before my son's college graduation. Now that one week is gone. I cannot have any other thing happen to stop my progress. Honestly my son's graduation is THE only good thing happening in my entire life. My marriage is a mess, we are financially ruined, my first born, brilliant, gorgeous, talented son is doing God-knows-what, I am fat, bald, and oh, I have cancer. Being able to see my younger son graduate is the ONLY positive thing I have to hang onto.

I feel partially responsible for getting sick, because I "went out"...... I ventured into the real world. A restaurant and a couple antique stores, and my immune system is ruined enough from chemo (and a loss of lymph nodes, too, I suppose), that I can't fight off a single germ.

So for the next 2 months I am going nowhere and seeing no one other than my immediate circle, and all my medical appointments. I have my bone scan set for tomorrow.

Best of health and positive thoughts to all who are reading.

exqualls
Regular Member


Date Joined Aug 2016
Total Posts : 166
   Posted 3/8/2017 10:16 AM (GMT -7)   
The doctor also ordered a chest xray because my cough is so bad, and I got the results of the xray and the bone scan today, and both are thankfully normal. Yeah!

Even better news, my husband FINALLY got a hearing date for his SSD-- June 20th. I cannot imagine that his disability would not be approved, so this will make a HUGE difference in our lives.

Best of health and positive thoughts to all who are reading.

straydog
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Date Joined Feb 2003
Total Posts : 15321
   Posted 3/8/2017 1:00 PM (GMT -7)   
Afternoon E, so sorry to read that you hit another bump in the road with the cold. It always seems like its something sometimes. Hopefully this cold will not linger so you can move forward. But very happy to read your xrays came back clear!!

And finally, a hearing date for your husband's claim. That is just awesome. It is extremely important that the attorney has all of your husbands medical records before the hearing. Does your husband keep the atty informed of his dr visits & the dates he was seen? One thing I learned when dealing with SS, never rely on them having all of the current medical records. I would go as far to contact the atty well in advance to what records he has in his file too.

I have been living on a heating pad, boy the massage really did a number on me. But, I am much looser than I was before. The hot tub helps also but I was a mess before & after, lol.

Keep these good things going your way, its about time!! Take care.
Susie
Moderator in Chronic Pain & Psoriasis Forums

exqualls
Regular Member


Date Joined Aug 2016
Total Posts : 166
   Posted 3/13/2017 6:19 PM (GMT -7)   
Well this endless coughing has continued through ten days now. The chest xray and the bone scan I had on Tuesday both came back normal. And other than a fever that got to 100.3 9 days ago, every days since then the highest it's gotten is 99.6 every single day. From day one of chemo, my onc has said if it gets to 100.4, go straight to the ER.

So last night it got up to 100.9, so off we went to the ER. They did another chest xray, nasal swab, blood draws, got a urine sample, etc. My BP got down extremely low -- like 83 over 52, which has never happened. They ruled out the flu and pneumonia, which is good. So their "best guess" at this point before the blood cultures come back in 3 days is bronchitis. I was given a broad spectrum antibiotic and 2 prescription cough medicines, one a capsule, and one is a liquid. Other than my fever dropping to normal, I think the cough suppressants are working as today my coughing bouts have been much shorter and not quite as gut wrenching. Tomorrow I'm due for chemo, and I suspect it will be cancelled again, unless I have a 100% improvement. So I'm praying for my miraculous recovery overnight!

Best of health and positive thoughts to all who are reading.

exqualls
Regular Member


Date Joined Aug 2016
Total Posts : 166
   Posted 3/15/2017 5:33 PM (GMT -7)   
Well, there was no miracle. The improvement to my coughing fits is basically a reduction in how long they last... It used to be up to an hour and a half, once I woke up, or what other "thing" set it off. Now they last anywhere from 10-45 minutes, with 20-25 being the norm. But they are PAINFUL. My stomach muscles and even my rib bones HURT from all the hacking.

And now with me missing two of my scheduled chemos, there is a very good chance that I will not be able to make it to my son's graduation.

Best of health and positive thoughts to all who are reading ...(including me!)

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 15321
   Posted 3/19/2017 11:17 AM (GMT -7)   
Hi E, oh I sure hope by now you are past the worst of it. The pain from that kind of coughing is a bugger. Hopefully some how you will still be able to see your son graduate, so don't throw in the towel yet. I know this is a huge concern & I understand.

Last week was spring break. I had my grandson all week plus a little boy down the street. I had my hands full keeping those two entertained believe me. I am still tired & have a lot to do to get caught up for the upcoming week. May have to break things up into 2 days.

Just wanted to pop on & say hi for now. Take care.
Susie
Moderator in Chronic Pain & Psoriasis Forums

exqualls
Regular Member


Date Joined Aug 2016
Total Posts : 166
   Posted 3/19/2017 4:28 PM (GMT -7)   
Oh, that does sound fun to have kids for a week! Fun, and busy! I hope you're able to catch up on what you have to do this week.

I still have my cough, although I can tell it's getting better. Coughing is how I wake up in the morning, but it doesn't last as long.....maybe 15 minutes. And I don't have as many bouts of coughing throughout the day, but even when I'm not coughing, I am fighting the urge to cough. I haven't had a fever in several days now. I pray when I go to the onc tomorrow I can get my chemo. Even if it weren't for the cough, and for the fact I am worrying about missing my son's graduation, it is depressing knowing I am NOT treating my cancer. The positive me that at first thought, "ok, I'm fighting cancer, step one, step 2, step 3, step 4, and voila, cancer is gone and I'm back to my life", has been replaced with a not so positive me who wonders if I'll ever get better. Maybe it will just be one setback after another. Just like with the right tissue expander failing.... maybe that was the first sign that my treatment/cure is not going to go well.

I try not to dwell on negative thoughts like that, but it's getting harder and harder to be as positive as I started out.

Best of health and positive thoughts to all who are reading (including me!)

exqualls
Regular Member


Date Joined Aug 2016
Total Posts : 166
   Posted 3/20/2017 6:09 PM (GMT -7)   
I was too sick again to get chemo. My onc refilled the 2 prescriptions for cough medicine, and sent me over to another clinic to get a chest xray (my 3rd one in 2 weeks), and wants me to see my PCP tomorrow for follow up on my cough. I can't afford all these visits!!! I've paid $75 3 weeks in a row to the onc, and haven't even gotten my chemo. Plus the cost of RX (not much, but still). Who knows how much my insurance company will cover from the ER visit, and now today more xrays. I'm going to call tomorrow to see if he xray results are still negative. If so, then I'm not going to see anyone else. If the results are positive, I'll set up an appointment with a pulmonologist (lung dr?). Of course I'm praying the results are negative as I can't afford to go to yet another doctor's appointment

These delays in treatment and this endless, hacking cough are really getting to me. While I was waiting to get my xrays I actually started crying in the waiting room! Not sobbing hysterically, just tears drizzling down my face. I didn't mind cancer treatment. I looked forward to it! As I knew I was making progress toward killing the cancer in my body.....and there was an end in sight. Now there is no end in sight. I will miss my son's graduation for sure.

exqualls
Regular Member


Date Joined Aug 2016
Total Posts : 166
   Posted 3/22/2017 3:36 PM (GMT -7)   
The 3rd xray was "suggestive" of pneumonia, so I went to see my PCP. The place I had the xray done was in his office building, and I was able to get in this morning. He says I do have pneumonia, that it was probably bronchitis that turned into pneumonia. So I got a stronger antibiotic and refills on my cough meds. I feel pretty confident that I won't be getting my chemo this coming Monday, which means 4 missed appointments. There is no way I'll be able to attend my son's graduation. Instead of having been done with my chemo treatments for at least 2 weeks, now I will most likely have 2-3 treatments remaining. While on Taxol my WBC has been the lowest on a weekly average, so IF I were to go to the ceremony, I would be in a closed convention center with thousands of people for four hours... No telling what I would pick up there.

I know it's not the end of the world that I can't go. My husband and other son are going to go and someone can face time it, or video it, or something or other.

I sure do feel beaten down by this pneumonia though. EXTREME fatigue, and dizziness and trouble even breathing at all while in the midst of my coughing attacks. It will seem like a piece of cake when I eventually get back to "only" fighting cancer.

Best of health and positive thoughts to all who are reading.

straydog
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Date Joined Feb 2003
Total Posts : 15321
   Posted 3/22/2017 6:32 PM (GMT -7)   
Oh, I am so sorry this turned into pneumonia. That is a tough one too. Hopefully the new med will kick in quickly. Please rest as much as you can to get past this. If you are not sleeping with a warm mist humidifier please do so. When my grandson had pneumonia the first of the year his dr told my son to get one & to put Vicks in it. He was having trouble breathing too. Vicks makes them now so be bought one. An old time remedy my mother used forever for coughing was to rub Vicks on the soles of the feet & put socks on at bedtime. My sister swears by it.

No, you cannot afford exposure to that many people even if you wore a heavy duty mask. I am so sorry you will not get to go.

Sending healing thoughts & prayers your way.
Susie
Moderator in Chronic Pain & Psoriasis Forums

exqualls
Regular Member


Date Joined Aug 2016
Total Posts : 166
   Posted 3/28/2017 6:28 PM (GMT -7)   
So yesterday I missed my 4th week in a row of Taxol, from this pneumonia I have. My PA called just to check on me, and if I'd been thinking straight I would have asked her a couple of things. Like I was scheduled to have 12 weekly Taxol treatments. I made it through the first 5 treatments before I had to stop due to being sick. I had presumed that when I am better I would just pick up where I left off and have the remaining 7 treatments. But I wonder if it's going to be that I have to have 12 in a row? I'm also wondering that if the answer is I just have the 7 remaining treatments, does this long interruption decrease its efficacy?

I am getting better slowly. Like maybe I cough only about 80% as much as I had been. But today I had one of the worst fits ever, lasting about 3 hours, and was so violent on my whole body that I "threw my back out".

I will be SO grateful when I only have cancer.

Best of health and positive thoughts to all who are reading.

straydog
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Date Joined Feb 2003
Total Posts : 15321
   Posted 3/30/2017 7:48 AM (GMT -7)   
E, pneumonia is a tough one & add in a compromised immune system its like a double hit I am sure. I think I would call the NP & ask about the Taxol. I have no idea on that either. Perhaps if you can get an answer it will take some of the stress away.

I am off to the tire store, have 3 tires that suddenly do not want to maintain tire pressure. Not sure what is going on there. Then swinging by the store to pick up a few things. We had a couple of tornadoes & straight line winds Sunday night. We were without power for 5 hours & I had a mess in my back yard to clean up. A lot of limbs fell off the tree behind us & some had to be fished out of the pool & cut up. We were very lucky compared to a lot of people that lost their homes. In my area fences down, power lines & trees. Spring in Texas.

If you call the NP please let me know what she says. Take care.
Susie
Moderator in Chronic Pain & Psoriasis Forums

exqualls
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Date Joined Aug 2016
Total Posts : 166
   Posted 4/1/2017 4:50 PM (GMT -7)   
Susie , your weather sounds pretty lousy! Florida gets more than it's fair share of non-relenting heat, severe rain and lightning, but I really think Texas has it worse.

"NP"? I'm not familiar with that one.... or, it's chemo brain getting me again.

I am LOATHE to sound like a broken record, especially a record set on something negative, but it has happened again --- bad to worse. So after 3 1/2 weeks of pneumonia and not being able to see anyone or to go anywhere, and having to delay my Taxol treatments, I finally had a breakthrough day, where I was starting to feel not quite as decrepit and pathetic. One of my BFFs lives just down the street and her birthday was the next day so we decided to walk around the block so I could give her a card also. I warned her I'd need to go slowly. And boy did I! We strolled VERY slowly---me afraid I'd burst into a coughing fit, and my friend just feeling a bit out of shape. So although we only walked slowly for about 45 minutes, I still had to bend over and cough several times.

Here's where the story turns really ugly. After i got home I had a painful 45 minute fit, curled into a ball as I hacked and hacked my lungs up. The coughs were so violent I could feel them in my back. I even said to my husband, "man, it feels like my back is exploding from the inside"! So I spent the rest of the night my couch in a lot of back pain, and fighting the urge to cough. When I woke up Tuesday morning I was completely unable to move my legs--- now numb from the hips down. I had maybe 10%feeling in each leg, but other than that they were dead weight. The rest of that day my husband had to lift me off the couch and I'd hold desperately onto his arm as we'd shuffle toward the bathroom a few feet away. And those few feet were a STRUGGLE!! Along the way my legs would "give way", sometimes at the hip, other times buckling at the knees or ankles. We decide to see how a day of complete rest affected the problem, so I did nothing but the shuffling to the bathroom routine the entire day. And when it was NO BETTER at all on Wednesday we went to the ER at lunchtime. By dinner time they knew they had to switch me to a bigger hospital and be admitted. It's almost Sunday now and I'm still here, and NO
BETTER. I am having every test done that anyone has ever heard of.

Post Edited (exqualls) : 4/1/2017 5:56:30 PM (GMT-6)


straydog
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   Posted 4/4/2017 10:20 AM (GMT -7)   
Oh E, in the hospital!!! I am so very sorry this has happened. I am completely stunned with this news. I hope by now the drs have figured out what is going on with you. I will be praying this is just a real bad sprain type of situation. You are so right, you have gone from bad to worse after reading this news. Kind of reminds me of the old saying, if it wasn't for bad luck I would have no luck at all. I can certainly remember feeling that way a few times in my life. I just hope that whatever is going on can be fixed quickly.

Texas spring weather can be nuts & usually is. We had another storm over the weekend. It hit at 1:30 with almost marble size hail The good news is our vehicles were not damaged. Tomorrow a cool front is coming in dropping us to the 40's!! We have been in the 60's in the morning time & high 80's by noon.

When you feel up to it let me know how you are doing. Sending healing thoughts & prayers your way. Before I forget, NP stands for nurse practitioner, sorry.
Susie
Moderator in Chronic Pain & Psoriasis Forums

Post Edited (straydog) : 4/4/2017 12:54:21 PM (GMT-6)


pmedic
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Date Joined Nov 2009
Total Posts : 1680
   Posted 4/5/2017 8:11 PM (GMT -7)   
I am been following your thread exqualls and was upset to read your last post. You have been through so much...
I am sending you my prayers and well wishes for you to get well and leave this chapter in the rear view mirror.
I hope you are recovering and feeling better.

Hugs and prayers,

tmjpain
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Date Joined Oct 2008
Total Posts : 2024
   Posted 4/6/2017 9:02 AM (GMT -7)   
I have also been following your story. I am sending you healing prayers. I hope that better days are coming your way very soon!!

straydog
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Date Joined Feb 2003
Total Posts : 15321
   Posted 4/9/2017 8:53 AM (GMT -7)   
E, I just wanted to post that I am thinking about you you & sending many healing thoughts & prayers your way.
Susie
Moderator in Chronic Pain & Psoriasis Forums

pmedic
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Date Joined Nov 2009
Total Posts : 1680
   Posted 4/11/2017 3:16 PM (GMT -7)   
Has anyone heard from exqualls? I am very concerned for her and miss her posts. I am continuing to pray she is home recovering.
Dx:Ulcerative Colitis March 2008
Dx: Crohns May 2008
Avascular necrosis bilateral knees from Prednisone. Surgery on left knee Oct 2011, Right knee April 2013. 8 blood transfusions, SVT, Anxiety due to past reactions. C-diff, pancreatitis and metabolic acidosis from medication.Currently on Lialda, Ambien, xanax(prn) D3, probiotic, Rowasa, Cimzia Azathioprine, Vancomycin

straydog
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Date Joined Feb 2003
Total Posts : 15321
   Posted 4/11/2017 3:28 PM (GMT -7)   
We have not heard anything since her last post. I am terribly concerned about her too. I check here several times a day hoping she may post.
Susie
Moderator in Chronic Pain & Psoriasis Forums

exqualls
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Date Joined Aug 2016
Total Posts : 166
   Posted 4/13/2017 3:53 PM (GMT -7)   
I have wanted to write sooner and not trying to seem mysterious, or leave anybody out in the blue as to what was going on. But things went in and out from worse to worse to worse and I actually don't have the energy to fill in the blanks this very moment. I just wanted to let everyone know that I was still alive. And I'll hopefully be able to update with all the gruesome details in the next couple of days . But treatment for the cancer is definitely on hold for probably several months at least and we'll see what happens with my other problems. Anyway,
, i'll write in a couple days when I can. Thanks for your healing thoughts everyone. I appreciate it and best of health and positive thoughts to all of you. bye-bye

Post Edited (exqualls) : 4/17/2017 10:56:50 AM (GMT-6)


Moira88
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Date Joined Apr 2017
Total Posts : 6
   Posted 4/14/2017 11:00 AM (GMT -7)   
Exqualls, I am also one of the many people following your posts in this forum...sending healing thoughts and prayers your way for a speedy recovery. Although your treatment for cancer may be on hold for months, I somehow believe that the treatments you have done so far have eliminated the cancer from your body. In your first post, when you described your history of going to the GYN and doctors, you could have been writing about my medical history as well. After finally going for a mammogram and having totally normal results, I realize how important these tests are, not only for one's physical health, but for their mental health as well. Thank you for your wonderful strength and for sharing all that you're going through...whether you realize it or not, you're helping a lot of people.

exqualls
Regular Member


Date Joined Aug 2016
Total Posts : 166
   Posted 4/14/2017 5:05 PM (GMT -7)   
Thank you so much, Moira. That has been my goal, to take the mystery out of breast cancer and catalog some of the things we may go through.

What happened after the bronchitis and pneumonia, was that I got Guillain-Barré Syndrome. Something I had vaguely heard of on the TV show "House", but that's about it. It's a neurological disorder and it's possible to die from it although not likely. Most people do have a complete recovery after a few months. it's just very slow going. I have MUCH to discuss after what happened after the emergency room transferred me to the big local, well respected, very prestigious local hospital. Unfortunately I need to stop now and hopefully get a chance to write again tomorrow. Let me just say there were horror stories from my 12 days at this "prestigous" hospital. I've transferred to a different hospital, and it is much better.

Best of health and positive thoughts to all who are reading.

Post Edited (exqualls) : 7/18/2017 3:49:07 PM (GMT-6)


pmedic
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Date Joined Nov 2009
Total Posts : 1680
   Posted 4/14/2017 9:19 PM (GMT -7)   
I am so glad you are on the mend exqualls! I have Crohn's disease and during one of my many stays in the hospital due to medication side effects or allergies , I had a hospitalist tell me that medication is nothing more than controlled poisoning of the body. I never forgot that.
Please rest and get strong . We will be here praying for you.

Post Edited (pmedic) : 4/15/2017 4:50:43 PM (GMT-6)

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