Starting Chemo May 2019
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Nice picture BAMR. Congrats on finishing chemo👍. Praying for a smooth going for surgery. Keep us posted. God bless. Pat 🔆
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Alright BAMR!
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Awesome BAMR. Ring that bell!! Please keep us posted on your post chemo recovery. Congratulations!! Thank you for sharing the pic
Neeli we are doing the DBMX due to Nat’s being BRCA2 positive. It reduces recurrence from 45% to less than 5% for BRCA2 positive women. So kind of an easy decision for us.
Fun to see everyone checking in. Hope everyone is hanging tough. Have a blessed weekend!!
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BAMR, that’s awesome!! Congrats on finishing chemo.
Neeli, I’m doing a BMx. I don’t have the genes, but the cancer I had was aggressive, and they found another spot of atypical cells. I don’t want to have to think about it anymore.
I had #9 Taxol yesterday. Uneventful again. My MO examined me and found no evidence of my lump! Praise God!! Today took me a little longer to snap back from the Benadryl. Hopefully I get some decent sleep and the steroid high will find me in the morning!
Thinking of you all with love and healing thoughts
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Palmetto praise God indeed!! No lump is fabulous. After AC #3 they could not feel Nat’s tumor either and still can’t!! Taxol #8 this next Tuesday!! Right behind you! Let’s keep it going!!
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palmetto this is wonderful news!! It is so reassuring to feel the chemo working!!!!!
re BMX or UMX or LX.... it seems the tradeoffs of these choices are very personal. Some people care deeply about appearance, some sensation, some never want another mammo, some hate the idea of an implant. I wanted the least surgery possible because of the sensation aspect. I specifically asked my surgeon to sacrifice appearance for sensation if the choice presented itself. I got a LX because survival stats for LX + rads were identical to MX and I had to get rads anyhow!
I also wanted to be careful of lymphedema. (I have a friend with rotten lymphedema..) I wwant to enjoy y saved life and not have horrid SEs if they are avoidable. So I successfully bargained for fewer nodes to be taken. I had a pCR, it turned out, and we suspected I might -- but only surgery can tell the whole tale. I would have been pissed to wake up cancer free w/ an over-done ALND. My BS agreed to take 4-5 nodes which would include the known cancerous node and the next few. And if there was any live cancer found anywhere, I'd go back for a 2nd surgery taking all the level 1 and 2 nodes. But I got lucky and did not have to do the 2nd surgery. The trend is towards taking fewer nodes. My surgeon had to convince the tumor board that I was an informed patient and would go in for 2nd surgery if needed.
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Thank you all, for the best wishes. I'm feeling really good this morning. I'm sure it's psychological, but even my burnt tongue and bad taste seems to be better this morning. I was worried about my ANC numbers for yesterday, too, but it jumped up to 1.8 after being at 1.2 last week. The dr told me it would have to be really, really bad to cancel my last treatment. I'm so happy to have gotten out there with no Neulasta for all of my Taxol treatments and I say a special prayer for those of you who have it. It's not terrible, I know; it's just one more thing to think about.
Neeli, my IDC tumor has shrunk more than half according to the sonogram measurements. The BS wants me to do bilateral oncoplastic lumpectomies, as long as the MRI coming up agrees with her measurements. She has convinced me that the recurrence rates are nearly identical for mastectomy vs lumpectomy, as long as you get clear margins, and the recovery time is so much better for the latter. So far, my lymph nodes do not show involvement, but she will do SNB on both sides. The ILC on my left side is the only thing she said might be more difficult. The tumors were much smaller, but the cancer is sneaky and harder to see. I will have two breast surgeons involved, partners, and trained and very experienced in oncoplasty surgery. I feel like I'm in good hands with them. They will each do a lumpectomy, then trade sides for the oncoplasty. Interesting! My surgery is already scheduled for Oct. 10, then will have radiation later in November after I've recovered. I'm excited to get Hazel (my name for my port) taken out during surgery! I have no love for Hazel even after living with her for 5 months.
I love reading all of your posts. Please keep talking. Helps so much to know I have friends going through this with me. I'm about to walk over to UT (about 2 miles from my house) so I can walk by Game Day and watch the crazy crowds. Today is the big UT vs LSU game. I tried to talk my husband into selling out tickets too someone who offered $1000 apiece, but he isn't interested. Seems to be the most wanted tickets in the nation today, and since it will be 103 at the start, I would be happy to sit home and watch it on ABC.
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Hello from Nashville! We're visiting Music Row. Having a much needed mini vacation.
I'll have enough fun for all of us tonight. 😎
Will update after my consult tomorrow.
Much love to all.
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have fun and good luck tomorrow! I visited the Honky tonk exactly one year ago. Take earplugs!
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Hey mightlybird01. It's definitely loud! We had a great evening. How are you?
PS is on board with the DIEP. I will see him again two months after radiation. He will decide if the surgery will take place 6 months after radiation ends or longer. It all depends on how fast I heal. He recommends that I have expanders placed immediately after the BMX. He sent a text to a PS from the city that I live in during my appointment. Pretty cool. Waiting on photos now. I wonder if they forgot about me. It's taking a long time.
I feel good about my decision and the PS.
I hope that you are all doing well.
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Hi all..
Palmetto-congrats on your lump being undetectable. That is terrific news.
Jrom- thinking of you and Nat today. Hoping all goes well with txt.
Happyanyway- Nice that you enjoyed Music Row. Glad that you got some fun into your PS trip. Sounds like your plan is set in motion. Wonderful news. When does your radiation start? Mine starts this week and will go every day until Oct. 2nd. I also started anastrozole last week. Hoping for minimal se's. Need to block that estrogen😣
BAMR-Sounds like you are in good hands. Hope all goes as planned. What a long road this has been for all of us. Trying to see light at the end of the tunnel for sure. 🔆
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Today was my birthday and sure was a bit emotional. I am an expat in the US (German), most of my family is in Germany and so this is always a bit hard to not be able to see them. But we had hours on the phone together and hubby is cooking a great dinner :-)!
My #7 has been good with no significant side effects. I have been so busy, I hardly noticed this week gone by. We went to Grand Rapids for a marathon (hubby ran, not me!), I got hay delivered and we had to finally fix the fences. One of my horses got injured 4 weeks ago and is coming back from the hospital on Friday, we had to remodel some of the paddocks to accommodate her lengthy rehab (orthopedic surgeon thinks 6 months until she can go back in the herd with the other horses). With animals, I assume just like with children, there is always something coming up.
My blood counts have stayed low but steady, oncologist was happy with them. I am eating grass fed beef liver once a week now to help with blood building but not sure if this makes a difference. I really like it though. I also made myself a big batch of bone broth. I like that a lot too. Since I feed my dog raw meat, I have 1/2 grass fed cow locally raised in my big freezer and I always had those things on hand. Now I started to share those goodies with my dog :-)!!!
My hair is growing a lot, but most of it is white and fuzzy. Some dark brown hair comes too. I find it so weird that the head hair starts growing while the eye brows are still going out. I still have a good amount of eye brow and eye lashes. But I am not sure if they hold on to the end. 5 more to go!
I hope everyone is enjoying some nicer autumn weather, and we can all keep up and finish in no time!0 -
Hi UpstateNYer! I have chemo until the end of the month. I should have my BMX late October or early November. I don't have it scheduled yet. I should have radiation in November or December. Reconstruction will be next year. You're right, it's a long process for everyone. How are you?
Happy birthday mightlybird01! How nice that you were able to talk to your family. I hope you enjoyed your dinner. How sweet of your husband!
I feel accomplished. I actually got a couple of miles of walking in yesterday and again today. My stamina isn't great, but I did it!
I'm thinking of you all.
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Happy Birthday, mightlybird! You do stay VERY busy! I think that's the key to making it through. I have white, fuzzy, thin pieces of hair spread out on my scalp, too. They do seem to be growing longer, but not filling in like I would hope. It's not a good bald look. I noticed today I have no eyebrows at all. Last week, I had a few hairs left. I read that eyelashes, too, grow out then drop again several times before they officially stick around.
HappyAnyway, you've been busy, too! Nashville would be so fun. Even though your treatment has been extended, it seems like it would be a help to have some recovery time between sessions.
After finishing last Friday, I'm not out of the Taxol SE woods yet. I mistakenly thought my taste and tongue were better; they're not. Still having nausea, dry mouth and lips. Big toe nails are almost all the way off. But, obviously, we can all handle these little inconveniences if the chemo does its job. Still waiting on the MRI so they can confirm tumor measurements. My insurance is balking even though the MO says it's standard of care. I'm sure I'll have it next week sometime.
Praying for a positive week for all of us.
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congrats BAMR!!!!
I'm heading in for #10 today. The end is in sight!!
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Neeli~ I'm having a BMX because I have bilateral BC. We tried lumpectomies, but what they thought were just spots of ADH on the L breast was actually IDC (17 micro-tumors), I'm pretty sure I won't need anymore lymph nodes removed as the sentinel nodes were negative.
Spent the weekend in Santa Cruz, my husband was in a half Ironman. He did amazing, finished 12th for his age group and got his best time ever. Good to have some fun mixed in with all this chemo.
Hope everyone has a good week!
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Hi everyone. All is good in N AZ. We just arrived at the CTCA for infusion #8!! Happyanyway we are on a similar course. We should finish Taxol on 10/8. Surgery in late October early November. Based on the BMX pathology it will be determined if radiation is necessary. Sometime thereafter we will get ovaries and Fallopian tubes removed.
We did a fun small hike in Sedona yesterday. Fun to get away. Hair is growing on Nat’s head and legs. She had minimal SEs. Pepcid seems to be helping a lot.
Mightlybird. We run 100 Angus cows on irrigated grass pastures and sell to 35+ families and 4 restaurants!! Aged natural grass beef is the ticket 😜. Hoping it helps Nat’s blood work. We’ll find out soon.
God bless to everyone. UpstateNYer Lacombattante keep us posted.
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HappyAnyway, I hope Nashville was fun! I'm looking forward to comparing notes with you on DIEP after my consult next week. In my head right now, it's looking like a nipple sparing BMx with DIEP reconstruction at the end of October/ early November. My MO doesn't think I'll need rads. Upon feel and CT scan, there's no evidence of node involvement. I guess path report will be final word.
Jrominger, thinking of you and Nat today. Prayers for good counts, continued treatment and minimal SE!
April0315, sounds like a pleasant weekend you had! Glad you got to have some fun. It looks like we're on the same schedule... I go in for #10 on Friday. So glad this "party" is almost over.
BAMR, how was YOUR weekend? I can only imagine the craziness in Austin!! It was a great game, even though it wasn't the outcome I was hoping for. I do hope your SE get better as you leave Taxol behind you.
Mightlybird, sounds like you also had a busy weekend and happy belated birthday to you! What part of Germany are you from? I am waiting to hear about a potential job that will have me moving there soon if I accept.
UpstateNYer, thank you. Always good to hear from you. How are the rads?
I *finally* heard someone ring the bell at treatment! I was so excited for them!! Now I have in my head that I want to take my photographer friend and do a shoot when I ring the bell. The only thing is that there are signs everywhere discouraging photo/video. Also, another bit of good news I've been clinging to: I've been worried about my counts dipping and having to postpone treatment. Last week, my ANC was 1.82. MO says the gray area is between 1-1.5. When I fall in that zone, she said she's more apt to reduce the dose than skip a week. That made me happy. Being focused on my end date is what keeps me pushing forward!
Sending hugs and healing thoughts to each of you!
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Hi All!
I bagged Taxol No 10 today! Only two more to go, the finish line gets closer
. BAMR, congratulations on finishing chemo!
Jrominger, I am keeping Nat in my thoughts and praying for an easy day today and no SEs.
April, no 10 today? Best of luck, sending positive vibes your way. Sounds like we are on the same schedule, are you finishing Sept 24th?
Mightlybird , a very happy belated birthday to you!
HappyAnyway, sounds like a lot of fun! Fantastic that you have your next steps planned and that you feel comfortable with them and with your medical team.
April0315, what a great weekend and congrats to your hubby, 12 th in halfIronman IS an achievement.
Palmetto, good news that no delays are in sight; I am praying that your counts stay steady. Assignment overseas could be a great opportunity; more than 20 years ago I decided to accept a foreign assignment in my then company and I am so happy I did it. It worked out superbly well not only professionally but also personally. It gave my son a possibility to study and work abroad and to experience different cultures.
I keep everyone in my thoughts and prayers daily, please be well!
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Lacombattante well done on #10!! Just two more!! Praying!!
BAMR please keep us posted on post chemo life.
Palmetto so happy your blood work was ok. We are waiting to hear about ours right now. That is always the concern but all of us are creeping closer to the finish line. Love hearing that bell ring We just heard another one
April0315. Agreed your husband is a stud. Love that.
Happyanyway you are back for more fun/games Friday correct?
UpstateNYer how is the rads going. Advice for us!!
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One rads suggestion: look into whether or not you may qualify for proton rads. You can approach a proton rads center directly and they will fight insurance for you. That's what I did. I negotiated a payment that was equal to my max out of pocket for the year (since I knew I'd get there eventually)... I had a left sided TNBC and that made the center confident of getting it covered. Also there are other clinical trials comparing protons to regular you can potentially get signed up for. Meanwhile they do need to fill up their expensive centers and maybe if they have room, they "deal"...?
Anyway a recent study came out that proton rads were just as good for disease prevention but had fewer SEs. I was concerned about my heart with left sided BC. Protons can be programmed to stop. they do not pass through and out of the body. So no heart worry or shoulder issues. I d have a tiny patch of slightly pink/irritated-looking skin (I know it's from rads, because it's right on the same "line" of where the radiation discoloration stopped.) But that has been it. I was radiated a lot (28 sessions) including nodes. It was a bit brutal on my skin but that happens in regular rads too and in any event heals up very quickly. Hyperbaric Ox helps healing a lot.
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thanks for the birthday wishes!
Congrats LaCombattan to Taxol #10. I can only dream!
And Jrominger on #8. I will hopefully do that tomorrow, though I am worried about my blood counts as I was quite exhausted today. Maybe just because it got so freaking hot and humid all of a sudden again.
Palmetto, I am from the South-West in Germany, within walking distance to Switzerland and France. Where will you potentially go? Germany is so small compared to the US.
Hubby gave me a fitbit for my birthday. Today I wore it all day. Outcome attached. 11,890 steps. That was not hard to reach with the regular dog walks and barn chores. If it had not been so hot I maybe would have exercised the horses. But I felt rather exhausted today. Tomorrow it probably will only be half that, as I have to be in the infusion center by 10am. May not even wear my new gadget tomorrow.. It will gain real importance only after chemo finished, as I would like to be diligent about reaching my exercise goal every day.Anybody else using a fitbit to keep on track?
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yes, number 10 was today. My labs are good, WBC a little up from last week, 4.2, so all is well there. Mentioned my tingly R foot. If it gets worse he will reduce the dose next session, if it's about the same we'll leave it alone. it's very mild. La Comb, we have the same finish date! Woo Hoo! I'm hoping my surgery is closer to 6 weeks out than the 4, I want to be off for the holidays. Not going anywhere but would love to have the extra time off over the holidays. To really enjoy them.
Santa Cruz WAS wonderful and my husband is pretty amazing
Being a spectator is not difficult. I woke up early to watch the swim and bike start. The bike portion was on the Pacific Coast Hwy, which they had blocked to traffic so I took advantage of that time and went back to hotel for a nap. Finish line was on the beach so I got there about 2 hours early, walked the beach, the wharf, watched the sea lions play, then watched him run to the last little bit. We didn't realize it at the time, but he qualified for the world half iron man in New Zealand. Unfortunately since we didn't stay late enough to know that they go to the next racer etc until all 40 slots are full.
This was the day before the race.
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mightlybird. I bet your numbers will be ok. That heat can take it out of you! Nat’s WBC’s were at 2.9 and ANC was at 1.6. Good enough for today. RBC were ok. It was like this 2 weeks ago. Then went up now back down a tad. Just need to get through 4 more!! Best of luck tomorrow!!
April0315. Awesome on #10. Just 2 weeks more. Sweet. Fantastic on your husband’s Ironman successes That is something to be proud of!! Thank you for sharing the beautiful picture. Pics are so fun to see. We were Stationed in San Jose for 3 yrs and spent a ton of time in Santa Cruz!!
Here is Natalie on our hike in Sedona yesterday.
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Hello fellows!
I made it through #8. Yeah. By blood counts have actually increased a little. Hbb is almost back to where it was post AC. Pleased about that. Interestingly my platelets seem to be unaffected by chemo.
I thought about blood counts some more and I realized that these counts must depend on the hydration level. I am so well hydrated, and constantly drink during infusion. There is not one person in my infusion center that does drink nearly as much as I do during infusion. They all eat (which I don't do) but do not drink that much. So I went into pubmed and it seems that hydration status is a major unknown for interpreting blood count results.
However, I must also say that my hydration practice has stayed constant throughout the treatment, and so the drops during Taxol are real but maybe the absolute values are not 100% reflecting the real situation.
Anyway, just rumbling on here, I am a scientist (molecular biology) mostly doing data analysis (bioinformatics and genome analyses) and when I have a table in front of me I have to come up with some hypothesis, even if this is not my field of expertise :-)!
In any case, I am resting the rest of the afternoon, it is too hot to do much anyway.
Clin Chem Lab Med. 2007;45(2):158-66.
Patient hydration: a major source of laboratory uncertainty.
Ritchie RF1, Ledue TB, Craig WY.
Author information
- 1
- Foundation for Blood Research, Scarborough, ME 04070-0190, USA. ritchie@fbr.org
Abstract
Movement of body water from compartment to compartment during any time period is attributable to forces active within and upon each space. The result of these forces leads to transfer of water between intravascular and extravascular compartments, as well as shifts between extracellular and intracellular spaces. The importance of these shifts and of the associated mechanism was described by Ernest Starling in 1896 in very much the same manner as it is viewed today. The end result of fluid transfer and its physiological and laboratory consequences has not been fully appreciated. Despite awareness that fluid shifts can affect laboratory analytical results, little recent investigation has addressed the problem in the routine clinical laboratory. Thus, the potential for significant misinterpretation remains. For example, it is known that individual laboratory test values can vary widely, depending on many factors including the subject's posture during and immediately before phlebotomy, leading to significant changes in the interpretation of blood analyte values. Furthermore, a variety of ubiquitous environmental effects have additional impact on fluid distribution and thus on test values. In other words, patient hydration status is a major pre-analytical variable that needs to be addressed by the clinical laboratory. The need to adjust data for patient hydration status is especially important in the case of colloid analytes for which the dynamic range includes a narrow "gray zone" where hydration changes of a few percentage points can change the clinical implications. The crucial importance of this adjustment is underscored by the fact that neither the testing laboratory nor the clinician are aware of this unseen circumstance and are thus compelled to work with data that do not necessarily reflect the clinical situation.
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Mightlybird. Thanks for the info. So the more hydrated you are right before getting your blood drawn could result in lower numbers due to the number of cells related to blood volume?? So maybe don’t drink as much 8 hrs prior to blood draw??
Our MO also said the flushing of the port can decrease the numbers as well. She can increase the numbers by almost a half a point(.5) with a redraw just an hour later without the port flush!!
Just curious. Thank you a lot. We are just one day apart on Taxol. Congrats on #8. 4 more!!!!
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jroinger, yes, this is my hypothesis. I think we here in this group are much better hydrated then the rest of people who represent that reference range. SO that this could at least contribute to slightly more "diluted" counts. I just realized that and will ask the RN next time.
The nurse who does my blood test just prior to infusion flushes my port and then she draws almost a whole syringe of blood out which she discards. Only then will she use those test vials. I think this must be the technique they are using to account for the port flush problem. She is very systematic about this.
Next time I think I will try and not drink a big glass of water right before I leave for the infusion center. I drank just before I left the house, drove 15 minutes, waited 5 minutes, the blood draw, then 1h wait for results, then infusion. I'll see if this makes a difference. My new lab, my body :-)!
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Santabarbarian- I had my first radiation treatment today. I asked if they used proton based rads. Was told by the radiation therapist that there are only 8 facilities in the country that offer it. He told me that proton based equipment has not been around long enough to see any long term studies showing the benefit over electron based therapy for breast cancers. He also told me proton based rads are most likely to be used on prostate cancers.
My treatment went very well. Rads session took about 5 minutes. Techs were kind and very efficient. One down, 15 to go.
April and Jrom- loved the pics.
April, congrats on hubby's accomplishment at the iron man competition. Sounds like you both had an enjoyable time.
Jrom, April, Lacombattant, Happyanyway, Mightlybird01,palmetto... Almost to the chemo finish line. Prayers go out to each of you daily.
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upstate... hooray for an uneventful first rads session. Hope they all go this smoothly.
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Hi UpstateNYer. So good to hear from you. It sounds like you are doing well!!! I heard that rads take very little time and 5 min sure is very little time!! So do you go every day but weekends for 16 days?? I am praying every day for this group. I want to hear of your continued success!
Mightlybird01. Thanks for the good info. Our nurse doesn’t dump the first syringe. I may ask her to just to see and maybe not drink too much until after the blood draw!! We do stay really hydrated as we are from AZ🥵 We just want to get these last 4 done on time as do all all of you
Have a glorious day everyone.
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