Starting Chemo May 2019
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thanks for the replies about vitamin C infusions, supplements and naturopathic doctors Alice and Santabarbarian. Wonderful wealth of information that you have shared. Much appreciated. Pat
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thanks for the replies about vitamin C infusions, supplements and naturopathic doctors Alice and Santabarbarian. Wonderful wealth of information that you have shared. Much appreciated. Pat
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I'm back. I was too tired to post for a while. My last AC was exhausting. Fatigue was hard to overcome. My sister bought me Dr. Schulze's Intestinal Formula #1. That definitely helps with the GI issues.
I have a two week break between AC and Taxol.
Thinking of you all.
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Thank you for all the good information!! It is very helpful.
Nat was released from the hospital after4 days. She had a bizarre diverticulitis flare up. She has never had intestinal issues. Tons of IV anitbiotics and then 14 days of Augmentin to clear up this mess. We have to push back AC #3 for 11 days to insure colon is ok for chemo. How they will know if it is cleared we are not sure. They sure scared us saying she has to stop chemo, do all the antibiotics or else she could have a rupture or go septic which is worse than the cancer. The CTCA said 11 days to wait should not cause any difficulties or set backs but we wish this didn't happen so we could just keep moving forward as her prognosis is good. Please pray for no more colon issues and no more delays. Hang tough everyone.
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Jrominger, I'm so sorry to hear about Nat. Poor thing. There have been several in our group alone that have been delayed. We have to trust our doctors, which is definitely easier said than done. Praying for both of you.
I have a prayer request, too, please. I have one good vein for my labs. It's now scarred. I am not afraid of needles, doctors, procedures, etc. I am afraid about my vein now. I do have a port. In the beginning, I was told that it may only be accessed on treatment days. I spoke with my infusion nurse about my concerns. She said that I can alternate my port with my arm for labs. I'm only two months into this. Trying not to worry.
Overall, my head is in the right place. Of course, it's really hard on the days that I am weak. I am stronger today and have a long list of questions for my MO on Friday.
You are all on my mind.
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prayers happyanyway - I’m surprised they can’t use port all the time. I have strong veins so we use those for labs but the girls always tell me they can do port if I would rather. It’s just that a nurse has to access - techs can’t.
Thinking good thoughts for Nat too
I’m half way done as of today! Trying to stay posi
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Thinking of all you wonderful people today and although I don’t consider myself much of a spiritual person I do spend a little time each day thinking of each of you, and truly wishing you the best... my own version of prayer I suppose.
Sorry to hear about Nats complications. That’s so scary, and it’s hard to be thrown off course like that when you have your schedule set in your mind
no more GI issues please!!HappyAnyway, Sorry to hear about your veins. So frustrating.
THank you to those who gave me hair advice the other day. I called my nurse and asked if MO knows what’s going on with my treatment, she said “no”. I asked if now would be a good time to cut my hair? She said “I would hold off” which is scaring the bejeezus out of me... today of course I wake up and my hair is shedding like crazy
I’m mentally in a really dark place. I’m afraid of infertility, My treatment is in jeopardy, my hair is coming out... life is dark0 -
Thank you Alicesneed and brittandherboobs.
It's alright to feel scared. We're all vulnerable, especially now. I never would have imagined that I would have bc, especially at this point in my life. I allow myself to feel all of my emotions, even the horrible ones. I had a full blown panic attack in front of my 8 yo, 15 yo and husband. It was bad. Once it passed I felt much better.
As far as hair goes, I did what felt right to me. There's no right or wrong way to handle it. I personally feel better with my head shaved. I miss my hair, but the shedding caused me great anxiety.
Just know that we're all in this together. I have much love and respect for everyone on here.
Edited to add, halfway there, Alicesneed! That's awesome.
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Britt- hang in there girl. It will get better. Cut your hair nice and short if you want - I liked mine super short. I’ve always been a shoulder hair length so it not only gave me power over the situation but it let me trial a new look. I thought about coloring it too! But I ended up sending it to chemo diva for a halo wig instead so I didn’t color. In hindsight I wished I had colored. I haven’t touched the halo - I just wear hats in public. Hey - I have a bunch of other hats and scarvesthat don’t fit me. If you’d like to have them I would be happy to send them to you. Just private message me your address! I have some other fun stuff I could send you too.
I went through years of infertility treatments - way before can$er struck. It sucks big time - find the support you need. But I can tell you it does get better. Because of it I now have a handsome, awesome 21 year old Colombian kid (I guess young man now!) adopted when he was 11. Never would have found him if not for infertility. So after the darkness light does shine. I know it doesn’t make it any easier right now but know you are in my thoughts.
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Happyanyway. Praying for strong veins!!!!
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Atta girl Alicesneeds. 1/2 way there! We are also. Just an 11 day delay because of dang colon. Hang tough.
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Good morning to all. I'm hoping you all have an easy day, mentally and physically. It sounds like it's been rough for several of us, one way or another. Special good wishes out to Nat and britt.
HappyAnyway, with the vein problem, are they able to tap veins in your legs instead of arms? I don't know if anyone does that but it seems worth asking.
This morning I woke up to new test results posted for me, from my blood tests Friday. I had a couple of funky results (which I'd seen earlier) but apparently they re-ran them to double check. I have no way to guess if "abnormal" is normal or not! Hoping someone gets in touch with me about it.
One of my test results is that my red blood count is a bit low, so I'm at least borderline anemic. I've started working on that with more meat. Had a small piece of rib eye steak for dinner last night, liverwurst for lunch yesterday. I've looked up some dietary remedies for it and will work through that as I can, and I'd like to consult with a nutritionist and will see if I can get that scheduled.
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MountainMia - I get your note about guessing if abnormal is normal or not! I definitely think it is different for us chemo people. My red is low too - I'm down to 3.17. My white bounced back nicely so I didn't have to take the nuelasta - so will mark that in the 'win' column. My glucose is bouncing all over though - it was running on the high side for quite some time (even before BC) - around 100 - then it bounced all the way to 177 day of May treatment - then yesterday all the way down to 69. Scratching my head on that one!
Feeling a little stronger mentally today - day 2. I know my bad days physically are coming tomorrow & Friday. Will make the most of today!
Hope you all are doing as well as possible!
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My insurer's "explanation of benefits" was posted for me today. Between the EOB and the hospital's billing, it's all indecipherable, hand-waving, magic wands... Somehow like magic they make up numbers and somehow like magic they adjust or pay them. As for my part, I met my annual out-of-pocket max 2 months ago, so unless more magic happens in reverse, I shouldn't have to shell out more. I feel quite lucky on the timing, since I should be done with treatment well before the end of the year. Lucky to have decent insurance that isn't fighting me, lucky to be able to afford the insurance, lucky to be able to afford the out-of-pocket. Makes me sad and angry for people who aren't as lucky and end up financially jeopardized, on top of their health concerns.
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yes, I agree Mountainmia. Hospitals tend to bulk procedures and it is hard to decipher how much things cost. I met my deductible at the first lumpectomy. I just had a pathology bill catch up to me from Feb. Also lucky that I qualified for a discount from hospital of 20% as well due to income. I think there are resources out there for people having trouble paying medical bills. I am lucky that I believe all of my upcoming procedures (another surgery and 3 weeks of rads) will be completed before years end.
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I couldn't agree more with those folks who don't have some kind of decent insurance to help them at this difficult time. It does get pricey but thank goodness for our insurance. Nat is feeling super well. We were supposed to have AC #3 today but due to her diverticulitis we have to postpone for 11 days
On the cool side, Nat can feel her tumor getting smaller!! Praise God. Our Oncologist said because of the TNBC the chemo works really well and the tumor would almost completely disapeear between #3 and #4 AC. Her prognosis was good 2A and no nodes that they didn't think she would need radiation. With the delay who knows but hopefully 11 days won't change much. We are sure nervous about #3 because of the diverticulitis but as Happyanyway says you have to trust your doctors. So hopefully all will go well on 6/24 with #3. Nat is out having coffee with a friend. Stay positive and best wishes to everyone. Still praying for good veins for Happyanyway!!!0 -
Good morning everyone. I'm waiting in the infusion lobby for my blood draw! Yay. My arm certainly needs a break.
I'm also going to insist on seeing my MO. I haven't seen him in over two months. I'll let you know how it goes.
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thoughts and prayers are with you today, Happyanyway. Please let us know how everything goes. Did your vein hold up ok or did they access your port? Did you speak with your MO? HUGS.
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UpstateNYer, I just got home. They took my blood from my port and I am glad! They tried to send a NP in. I said no, I want my doctor. I waited for 45 minutes, but he did visit with me and answered my questions. My hemoglobin is 7.9. He said if it drops to 7.0, I will need a transfusion. He is referring me to an ENT for tinnitus. He wants to add carboplatin to my taxol. Tinnitus can be a side effect of carboplatin, hence a visit with an ENT first. He doesn't want tinnitus to be a permanent problem. Next week I will have Taxol only, with carboplatin possibly being added later. He also ordered a mammogram and ultrasound to check my progress. I don't believe I feel a lump now. Can't wait to see the results. I asked him if I achieve pCR would I still need radiation. He said ultimately, that's my choice, but he would do it.
I think that's all for now.
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Hi Happyanyway. Still praying for your veins. What does the carboplatin do? You and Nat have similar diagnoses. Our PA oncologist believes Nat will not have to do radiation as there are no nodes involved, however, that was before this 11 day set back. We'll see when we get back to chemo and they won't know until they do the mastectomies. Weird but can't wait until then, that means chemo is done. Doing #3 AC on the 24th. Our BC/BS covers the majority of our procedures but just found out the anesthesiologist does not do BC/BS and we have to cover 100% of out of network costs. We'll have to use the anesthesiologist 3 more times
Hopefully they will work with us, payment plan, etc...so it won't be outrageous. The cancer clinic said they may me able to help us work something out. Kind of scary just sitting around hoping her diverticulitis is healing so we can get started again. But Nat feels 100% normal so that is a blessing.0 -
Hello jrominger. Thank you for your prayers. You and Nat are in my prayers, too. My MO said carboplatin may increase my odds by 9%. I haven't researched it yet. I'm planning on BMX, too. I think it sucks that the anesthesiologist is out of network. Can BC/BS refer you to one that is in network? Our family had medical debt prior to my diagnosis. I pay between $15-$40 a month to different providers.
I also am glad that I have decent health coverage. We have a high premium, high deductible, high out of pocket. Oh well, I'm getting my money's worth this year and probably an additional year or two.
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Since we are being treated at the Cancer Treatments Centers of America in Goodyear, AZ they only have this set of anesthesiologists, so we assume they will work with us be that is yet to be determined. I will ask about carboplatin with our MO when we do #3 AC. Is BMX another treatment for TNBC? Trust me you are in our prayers and will continue to be.
J
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BMX = bilateral mastectomy. Surely they will work with you. Let me know what Nat's MO thinks about carboplatin.
One other thing, my MO said that the discoloration of my nails from AC should grow out. I shouldn't lose them.
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Hi everybody, happy Friday.
I hope everybody’s feeling well.
Alice, thank you so much for the offer. My closet is filled to the brim with hats and scarves, I’ve started hanging them on my walls but your kindness isn’t lost on me... and thank you for the words of reassurance especially regarding infertility. For me the potential to never be a mother has been harder to cope with than the cancer itself. Adoption is a beautiful thing, maybe I should look into it some more.
My MO decided to change my schedule to avoid giving me filgrastim. He said it would be too risky to let me try and take the medication again after the reaction I had. So new schedule is AC every 3 weeks (I have 3 more cycles), then 12 weekly taxol treatments. I had an extremely hard time accepting this news yesterday, fully broke down at a friends house because I feel like now this will never end... I’m in treatment until November, and then still do radiation after that. I’m also worried about not doing dose dense because of the difference in efficacy? I have an oncotype score of 35, so I’m high risk of reoccurrence:(
Tomorrow is head shave day. I’m terrified.
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Happyanyway, Glad you got to see your MO. I sure hope that the carboplantin does not worsen your tinnitus. Hope that you will achieve pCR. How many weeks of Taxol will you need? I have decided to take my chemo treatment next week. I will only need one more after that. Hopefully, will be ok with se's.
Britt-- be strong. I know that it seems like a lot to take right now. You need to take it one day at a time. Forgive the platitude. My Onco score is also high, and I was told by my pathologist that I have closer to a 24% benefit taking chemo. So recurrence is greatly lowered (hopefully). I am still facing surgery after chemo to rid me of marginal DCIS, then 3 weeks of radiation. Good luck with your head shaving, it was not too bad for me. Take care.
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ok got it on the BMX. I’m not up on all the lingo. Nat will definitely have the BMX after chemo (3 to 4 weeks). Since she is BRCA2 the BMX will reduce her chance of recurrence to less than 10% and maybe less than 5%. Anxious to get back to chemo. The 11 day lull scares us but the colon has to heal. I will check with the MO about carboplatin and let you know what we find out.
Sorry Britt about the new schedule. We are kind of on the same deal. With the 11 day delay. The CTCA did not seem overly worried about the delay.
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jrominger, there is a link on the left margin to a list of abbreviations. You might find it helpful.
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Thank you
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Hello everyone. I just realized that I misspelled carboplatin.
UpstateNYer, I will have 12 weekly rounds of Taxol. Hopefully my hemoglobin level will not throw off my schedule. It seems that hardly anyone makes it through without some sort of change.
Brittandherboobs, you're on my mind. I hope you feel better soon.
I'm tired, but otherwise well. I hope you all enjoy your weekend.
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Happy Father's Day jrominger and all of the other dads out there!
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