Chemo in July 2015

Batesburg

When I was first diagnosed from a biopsy of my breast I went in a few days later - met with a surgeon to establish relationship knowing I wouldn't do surgery until after chemo. He felt my armpits and felt a suspicious enlargement and under ultrasound it was biopsied and found to be cancerous. So, I did not do the sentinel node route because of my positive biopsy of one lymph node. I suspect during surgery they will take that node out and others to look at under microscope to determine how many nodes to remove until an "all clear". I am not certain about radiation. I will meet with my surgeon again soon as the time is approaching for surgery (probably late Dec)

With all of your experience here, who/how do you know radiation is in your future? Who determines that? Surgeon? MO?

Gretagirl

Batesburg my surgeon MO and radiologist all said radiation. I will back track found lump doing mammogram had surgeon take out lump not do a needle biopsy. Came back cancer went back in to check nodes and clean up margins. Nodes were clear. Due to my type of cancer IDC with ER PR positive surgeon told me schedule with rad doc to start radiation that was all I needed except for the tamoxifen. Went to see raddoc she is the one who told me I was HER2 positive so that changed treatment to include chemo. Cancer wise mastectomy was not suggested to me. Hope this helps.

Jbandkb1

Mdoc524 next time I see my MO I'm going to ask about the radiation again. Just want to know her reasoning more. I have no problem getting it if I need & or throwing it all at cancer. But still want to understand the why when it was up in the air before what changed. I know others after MX or BMX if margines aren't clean will need it. I already had a lumpectomy without clean margines & node negative,but will have a BMX on 12/30. I was assuming that will take care of the rest of the margines. I liked seeing the end of the road, but I guess my road has now been made longer. Aw well

MissBee123

Well all, looks like I'm getting an unexpected break from chemo. I had my checkup MRI after 3 cycles (TCHP) and my tumor has shown no response to treatment. My oncologist has said tentatively that may be because more of the tumor is DCIS than IDC, but they really aren't sure. Also have to have a followup with a cardiologist tomorrow as my heart doesn't seem to have enjoyed chemo either and has shown an abnormality on my aortic valve.

Given the circumstances, chemo is stopped for now and instead they are prepping me for surgery on the 28th. My breast surgeon is still recommending a double mastectomy due to tumor size and I am fighting tooth and nail to have a lumpectomy. I don't know if it will work in the end, I just don't want a mastectomy to simply be the default option; it seems to be a cosmetic recommendation rather than a health one, so I am trying to see what the plastic surgeon can do.

I may or may not have further chemo following surgery, depends on what they find when they biopsy the tumor. The doctors aren't too concerned yet, but I am very alarmed that there has been no progress. Hoping for a positive outcome.

Twnkltoz: Hope you have a great birthday today

Batesburg: My doctors said I would have an MRI just before surgery and they would insert a wire that would let them know where the tumor was. Also, when you had your biopsy did they insert a metal clip? I have one for each biopsy site so they can track the location and tumor easily.

SVGsurvive: I had an MRi which showed two swollen and suspicious nodes. Based upon that, I was then sent for an MRI guided biopsy and that's SUPER fun: MRI graphs boobies, pulled out, while facedown MRI safe needles are inserted, put back in, MRI confirms needles are in the correct spot, pulled back out, doc squats on ground below MRI table and vacuums out tissue samples. Not the nicest experience, but effective.

Peabrain: Happy birthday! Looks like it was a good one, current health status and lack of donuts excepted!

Suzanne1971

happy belated bday Peabrain and happy birthday twinkle!

Miss bee- that is my worst fear- that my tumors aren't responding to chemo. I have no idea, nor do my docs as neither of my tumors are palpable. I have an MRI scheduled for the end of October (after chemo), and my fingers, toes and everything will else will be crossed for good news.

I guess I would just need to know that chemo did its job, even though I had to have it due to positive lymph node- mine was found during an MRI, and then I went to the ultrasound for a biopsy.

I have to have a single mastectomy, so I am opting for bilateral. Not knowing my family history (I am brca negative), and being young has sealed that deal for me. I don't want to do this again. Originally was hoping for a lumpectomy, but once the node was involved and the second tumor was found, I was on the bmx road all the way.

And my team says surgery is 4-8 weeks after last chemo, it is interesting how these numbers vary!

It's not scheduled yet, but I'm pushing for mid December, that way I can get through my Holiday season (the crazy busy time of year for my biz, so I'm really needing to do it). But this does come first, so if it has to interfere with my business, I can deal. I have any army of artist friends here that are committed to helping me ship orders and run craft show booths!

There is a pretty mighty team of neo adjuvants here, which is comforting.

I have to have radiation as well, and they suggest 4-8 weeks after surgery, so maybe early Feb? I, once again, have some important work stuff at the end of Jan, so I'm hoping for a healthy window between surgery and radiation to be able to attend my trade show

Just trying to hang on to whatever normalcy I can during all of this.

RuthElizabeth

hi everyone. My prayers are still with you all. I'm done with chemo. I'm still struggling with belly issues. Bowels are pretty normal, just feel sick all the time. I feel like a wimp.... They did X-rays, and I'm waiting for a call about an ultrasound. Still taking the probiotics, I think they help a bit. I'm to see alternating appointments every three months with onc dr and surgeon. But, no one is telling me if there are any pre appointment tests. I started back to working. Have to take a break after three hours or so, and when I rest, I fall right to sleep. I am catching up on well needed sleep, haha. I'm having some anxiety issues. Really don't feel comfortable going away from the house. If I do, after an hour, I need to leave. And if I can't, then my belly really starts to hurt. I'm worried my problems with my belly are anxie related. I could cry all the time, and i should be happy. Guess it all takes time.

I hope you all don't min did I stay in your loop, even though I'm done with chemo. You all still give me strength. Peace and love to you all. Ruth

mdoc524

SVGsurvive & 27Heart - I had BMX first and have TE's in - my BS did not think I would need Chemo or Rads and then pathology came back 2 positive nodes .. was just with my Plastic surgeon yesterday and I asked him about having Radiation with TE's and he said not an issue - you can even have RADs with implants already in - he said they usually wait 3 months after Radiation to do the implant exchange .. so for me I should finish Chemo in December - wait a month and then 4-6 weeks radiation and then wait 3 months for implant exchange ... just sharing what I was told .. and you are right they do not offer much - you have to push and ask ... I also had a PET scan prior to chemo which all came back clear except Right Ovarian cyst which is my next step ..

Greatgirl - thank for sharing .. the crazy thing for me - I have had several urine analysis and all come back negative .. MO nurse told me that Cytoxan affects the bladder and I could be suffering lingering side effects from that .. it has lessened a bit since earlier in the week.. I have Taxol #2 tomorrow so curious to see what happens over weekend - it started last time on Day 2 post chemo .. fingers crossed does not happen any more .. but good to know about B Vitamins.. Agree on Lumpectomy vs Mastectomy - so many do well with either and I think it is personal choice.. for me I am so glad I chose BMX because they first told me based on all the biopsies and tests that I had a 1cm tumor and did not expect any lymph node involvement well pathology came back 3.4cm tumor with 2 lymph nodes involved. My BS only took the 2 lymph nodes that looked and felt suspicious and left the rest in advising treatment would be the same regardless if any others were positive and they don't take them all anymore .. still concerned but trusting that the chemo and rads wll get any residual and nothing lit up in Pet Scan ... hard not to worry or 2nd guess ourselves or the doctors ..

Batesburg - my surgeon and MO (both from same group) advised me that Rads should be in my future and that once chemo done they would refer me to Radiation Oncologist to discuss a month after Chemo - so I am just planning on it.. I was advised because of lymph node involvement radiation should be in the plan

Jbandkb1 - I would definitely question it especially if your nodes were negative .. BMX should get margins but I am not sure .. I question everything .. I go to every apt with a list of questions .. once I was node positive I knew I would be in for all treatments

MissBee - my heart aches for you ... I hope all turns out well - surgery and findings and all - you need to catch a break! We are here for you!!

Happy Happy Birthday to you Twnkltoz - hope you got to enjoy your day!

Suzanne 1971 - hope you get the breaks you need to be able to do your important work .. I understand and I am working thru chemo on the days I can get out of bed and it is not easy...

Ruth - so great to hear from you - sorry you are still have some belly issues and anxiety not great - hope you have someone to help you with the anxiety .. sounds ike you are getting some much needed rest - funny I do sleep at night not fully and all I want to do most days is shut my eyes - they just always feel so heavy - I dream of days of not being so tired.. Of course you are always welcome here anytime ... hang in there!!!

All - while I had my surgery first - I do hope those still waiting for surgery get all answers and what you need to get thru the surgery phase and if I can help please don't hesitate

Tip - for anyone suffering from Cold Sores - I now have my 2nd one in and on my nose .. Abreva works but takes so long .. I put Benzoil Peroxide 5% Wash on it and dried it right up .. I only put it on the outside of my nose even though some of the sore was on the inside .. just wanted to share ..

Mary

Twnkltoz

thank you for the birthday wishes! My surgeon and MO both said I'd need radiation, I assume because of the positive node. I have an appointment with my radiation onc in a couple weeks so I can get the skinny. Also need to make one with the surgeon.

Started to list everyone I'm sending positive thoughts to, but you all need them so I'll include you all! Amazing how different or journeys are.

6feetover

Twnkltoz: a very Happy Birthday to you! I hope you're able to do something fun!

Twnkltoz

stuffed myself with lobster. Celebrations will continue through the weekend!

Peabrain

Went in for my third neupogen shot this week and was so nauseous I ended up examining the doctor office carpet up close. Just crawled down and curled up. Turns out I will get Neupogen shots Sat and Sun too and no more chemo until at least Thursday. My neutrophils count is .06.

So much for my chemo schedule. I was hoping to stay on track, finish in early Dec, then have my ovaries and port out before the holidays. No way I will have my surgeries until Jan now. Good thing my DH bought birthday present tickets to Cozumel for mid Feb!

Hugs to everyone who feels like curling up on the floor with me.

Twnkltoz

sorry @peabrain

Bliss58

Happy belated birthday wishes to @PeaBrain, @MissBee and @Twinkle.

@MissBee, so sorry to hear you didn't get a response to the TCHP. @Batesburg, loved your words of wisdom and inspiration. Thank you.

Originally I was told I would need radiation, and I guess because of positive nodes, but now my MO says she's not sure since my nodes seem to be clear. I have a PET scan on Tuesday and an appt. with RO on Wednesday, so I'll know more next week. Nice to know that it's not just my MO who doesn't volunteer information. One more TCHP and then I'm guessing surgery early to mid-December. Will be meeting again with BS, but don't have an appt. yet. Tomorrow is my mother's 83rd birthday and I'm looking forward to celebrating with my whole family. Wishing all of you mild SEs and a great fall weekend! (((Hugs))) to all.

-Barbara

Batesburg

Peabrain- sorry about your schedule change. try not to get too discouraged about the neutrophils - carboplatin is notorious for that. I started out with 3 neupogens each day after carbo and that didn't work, so they upped it to four days and lowered my carbo dose a tad and that did the trick and I was able to continue on throughout the rest of treatment without a glitch.

These "people" set up these treatment protocols that are what they consider a "schedule" and then we as breast cancer patients get to give them a reality check- our human bodies have never been right on schedule and this isn't any different.... so, if you can (and I had to work on this for a few weeks before I finally "got it") tell yourself this is YOUR treatment and therefore the RIGHT treatment for YOU!

Sorry if I sound too "preachy" but it is so frustrating to be the "reality checkers" for these treatment protocols and our bodies are not made to take on some of these toxins at the rate the "books say"!!!

The neupogen WILL work and thank goodness your body is telling them to slow down to then catch up!!!

mdoc524

Peabrain - I will curl up on the floor with you ... Went in yesterday for 2nd Taxol & when they did my vitals fever 100.7 and hemoglobin dropped to 8.2 from an 11.2 last week.... Now let me add i still having hemorroid issues left over from AC nastiness that sometimes bleed if stool not soft & had 2 bleeding issues yesterday morning where I would say a good amount of blood came out both times which I assume impacted my hemoglobin... Well I was sent to the ER where my temp went up to 101.3 & waited hours to be seen & then admitted at 9pm ... MO saying Taxol does not drop hemoglobin like that so have to be evaluated & monitored... And Obviously my 2nd Taxol did not happen yesterday - so disappointed in the delay as this now puts my chemo past Christmas & was soooo hoping to be den before the Holidays...

No temp this morning so hoping they will let me go home - Peabrain hugs to you & everyone else feeling crappy - this just sucks but we will get thru it 😘👍

Mary

6feetover

All: I feel for you and your misery with the varying SEs. I haven't gotten a Neupogen shot thus far with the Taxol/Carbo regimen (knock on wood?); my most recent "Abs Neutrophil Count" was 1.4. It's my hematocrit and hemoglobin that never come up–25.5 and 8.4, respectively, based on my most recent CBC. I'm in a perpetual state of anemia, and all I seem to do is sleep. The most mild exertion causes such fatigue/soft tissue pain (I have Ehlers-Danlos syndrome, to boot) that I basically need to lie down and "recharge" after any activity. At least the sun's out today after last night's torrential downpour–hopefully I'll be able to force myself to get outside! *Gentle hugs* to all!

Bliss58

Oh, Mary, I'm so sorry to hear you had to go to the hospital. Here's hoping they let you go home today. Hugs, Barbara

mama26

mdoc524-

OH NOOOOOO! So so sorry you're back in the hospital. And with Taxol, no less. I think you needed a break between AC and starting Taxol. You were so sick and now this. Hugs and prayers to you Mary. Keep me updated.

MissBee123

Spoke to the cardiologist yesterday. Apparently my aortic valve (the little flaps in your aorta that stop blood from flowing backwards) are not functioning quite the way they should. She said she noticed it on my baseline echocardiogram, but since starting chemo it's become worse. This is normally something seen in people twice my age, not a 32-year-old! So next week I get to have a special echocardiogram where they stick a camera tube down my throat to heart level and get an extra close look. Best case? Could be nothing. Worst case? I'll need heart surgery.

At this point I have chemo-resistant breast cancer, thyroid cancer, and possibly a congenital heart condition. I'm a lifelong runner, exercise 5 days a week, and eat well. I don't smoke, drink, never used drugs. My parents have no significant medical history. Let me tell you, it feels like paying for home insurance for years only to find out when your house is on fire that your insurance only covers front door replacement.

I mean, did I unknowingly play in a nuclear power plant as a child? Have I been sleepwalking my way into smoking lounges at night? Perhaps the water I drink is actually vodka? Seriously, what the hell?!

Suzanne1971: Yes, one of my fears has come true. Everyone kept asking me, "Does it feel smaller?" and I kept telling them no, but that perhaps I was not an objective judge. It was still a shock to hear that it hadn't responded, despite how it felt. On the good side, the doctors are not out of plans/treatments/ideas. Chemo may not have worked but they can still cut the f***er out! (Pardon me, I'm a bit mad). I hope your healthy window goes well and that you can attend your trade show!

Ruth: We are always here. I see chemo groups from much earlier in the year that are still very active with posting! Finishing treatment doesn't mean we have to give up posting. Also, for your stomach, it may be anecdotal, but I found eliminating dairy really helped me. I've never had issues with dairy before but my new sensitive "chemo stomach" suddenly couldn't handle it. Maybe it's worth a try?

Mary: Hope you are feeling better and can come home soon! I rejoice for those of us here who are doing well and I hope soon it will be ALL of us!

6feetover

{{{MissBee123}}}

Gretagirl

Hello Everyone. Sorry to hear of the SEs, pain, hospital stays, schedule changes and not responding to treatment. It hurts to see all the issues this disease brings on! My prayers are with us. I have had some mild neuropathy and weakness in my quadriceps for some reason. I am definitely more tired. Fifth chemo scheduled for Wednesday. I have become a huge gremaphobic! I too want his chemo finished on schedule. I lost control the other night slinging a fork and telling hubby what I thought of cancer.

Batesburg

Good morning everyone (9am here on east coast of US),

Quick question.....anyone else get fevers along the way but not have to go to the hospital? Most of yesterday I felt a little sick and then finally took my temp late yesterday and it was 99.8, then went up to 100.1 - connected with my MO who said to monitor- took two ibuprofen and the fever broke last even down to 98.4, slept OK and not sure what today will bring.....just wonder if its a bug starting - hopefully not febrile neutropenia.

Anyone have similar experience or any thoughts?

Thunder7

Batesberg, I had increasing days of fever with each infusion. Not only did the days increase but the fever got higher. After the 3rd infusion I had a fever until I started steroids for the last one. They put me on antibiotics but they did nothing.

Apparently 2% of TC patients immune system try to fight the chemo. I have had a fever since I got off the steroids 2 weeks ago from my final TC. Last two days it has been lower and more manageable.

The deal I have with my MO is to call with fever 102+ no matter what and at lower fevers if I feel bad. (Other than the fever yuck) Please contact your MO and see what they will do.

On the boards I searched and only found one other person with this issue. She left the board in 2013.

Hope this helps.

Thunder7

mdoc524

Hi All - thanks so much for your well wishes... still in hospital & will be until at least tomorrow ... All cultures came back negative - fever still going so started Antibiotics last night thinking it is a sinus infection as I have had the worst in my life sinus headache form front to back for days.. They will only give me Tylenol for the headache & fever which does almost nothing need ibuprofen - won't give it until Rule out GI Bleeding - no blood in stool but because hemorroids bleeds they want to be sure. And hemoglobin still at 8.2 which I now know most likely won't come up without a transfusion. Question for all - how many have had transfusions & any issues? I am nervous about it. MO staff saying My Taxol last week would not have dropped hemoglobin by 3 pts and General Dr & GI docs don't think the Bleeding hemorroids would cause. Personally I think it is a Combo of both and not having a week break in between AC & starting Taxol.

Batesburg - my temp has not been below 99 in weeks - aside from these past couple days - it would go from 99.5 to 100.1-.2. I said something to MO office & were not concerned ... I agree with Thunder - body way of reacting to Chemo. I would still discuss with your MO so it can be monitored.... Good luck. I hate it because I am so cold all the time with chills at times due to rise in temp..

Gretagirl - right with you on losing control - I wish I had a fork to sling when they told me I was not going home today.

MissBee - I so wish there more I could do or say than Hugs for you... I hate even complaining. You will get thru these bumps and we are here for you.. 😘❤️

Have a great rest of the weekend - here's to hoping I can go home tomorrow

Mary

Batesburg

Thanks Thunder and mdoc,

Still fighting this fever- just took 400mg ibuprofen- will see what that does to the reading in a bit. In communication w MO- she gave me her cell phone number a while back so we've been texting...love it!!!

mdoc, you know that these chemo drugs have nadir points.....the lowest point of hitting your bone marrow, and each of us have a different nadir point. Perhaps your nadir with AC hit at the same time that taxol nadir hit and voila...you have a drop like that. Have they re-run HBG each day you are there? (prob have- dumb question).

I got a transfusion at 7.9 but basically had to beg for it....they don't routinely give blood here unless at 7.0 or below. My transfusion was uneventful, thank goodness, and they watch you very closely when first infusing. Sadly, my HGB only went up a point with one unit of blood, but they say that is the general rule...one point per unit....then the next week after chemo fell down to 8.7 and probably hovering around 8 right now. I think my body is adjusting to it to some degree. And, FYI- I don't think they like to give blood unless absolutely necessary because you build up anti-bodies to the blood and the more you get the more you have a chance to have a reaction. So, really, if you can tolerate it, best to wait and hopefully your body will build on its own. Taxol didn't hit my bone marrow like carbo did so maybe you will do some catch up with the HGB in time. Please hang in there. I love how you are listening to your gut in this stuff- smart!

Thunder....so glad the fevers are becoming more manageable......

Rooting for everyone- can't wait until this time next year- we can look back and say, wow, look what we all got through??!!!

Mamiya

mdoc, a few weeks ago I had one unit of blood at 8.1. The rule at my place is 8 but all my other counts had dipped pretty low and I felt awful so, after skipping a taxol treatment on a Monday I ended up getting blood on that Thursday. My hemoglobin went up to 11 and my neutrophils went from .66 to 2.2 by the next Monday (3 days). I had zero issues except one male nurse seemed pissed off that he had to stay late and was kind of a jerk to me LOL. I felt SO much better after the transfusion. I don't know if it is always that effective but it worked for me. I hope they can sort you out and get you feeling better - and home!!!

Cheesequake

My HGB was at 8.6 on Friday (the day of TCH #5) and I've been feeling a little weak, but I figure that's to be expected. The nurse told me I may want to call for a transfusion in the next week if it gets too difficult to manage. I have little appetite, but I'm trying to work in as much meat, fish and spinach as possible to boost iron/hemoglobin levels myself - hoping it's enough!

Wishing you all well - this road is SO long!

Suzanne1971

with 1 more TCHP to go, I am just now wondering why I don't know my counts- you all recite your often. I only get my blood drawn the day before an infusion, and just assume that all is well, as treatment has stayed on schedule.

Mary- hope you are in the comfort of your own home now, and I'm sorry for everything you're going through, and have been through.

Miss Bee- fingers, toes, and everything else crossed for great results from your Echo. I, too know they can cut it all out when the time comes- and I'm glad you are finding the positive. I know that chemo isn't the only answer, and I'm surgery will get the job done. Hugs.

T minus 8 days till my last chemo

Peabrain

To Do List

• wake up (good start)
• get dressed and other typical morning tasks
• have husband chauffeur drive to doctors office
• hike across parking lot (this counts as daily exercise)
• wait in reception until name is called (on bad days, examine carpet closely and get wheelchair service)
• weigh in (more or less stable, but slowly dropping due to lack of food interest)
• blood pressure, temperature (the usual slightly low self)
• heart rate (ridiculously high due to low red blood cells, but pretend we are at very high altitude)
• submit arm for blood testing (try not to make sad face or be wimpy)
• get blood draw results (try not to make sad face about lack of white blood cells)
• roll up right sleeve, deep breath (there's going to be a slight sting, hope they have warmed up the medicine)
• get neupogen shot (ry not to make a sad face, makes your bones ache like growing pains, stimulates bone marrow)
• make appointment for following day
• hike across parking lot (fitbit not working, probably very far - 300 shuffles)
• go home, collapse on couch (a recommended must do after big outings)
• thank husband for driving, excellent care and lunch
• repeat every day until immune system recovers from latest beating

halfway through chemo, but temporarily stalled out

Twnkltoz

@suzanne1971, my medical group has an awesome website where you get access to all your medical records, including test results. Maybe you can ask your doc if there's a way to get your counts?