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123Donna View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Aug 07 2019 at 9:04am
Welcome Strongtogether,

This is a group no one wants to join, but hopefully you'll find this forum with useful information and support.  We understand all the emotions and physical issues you are going through.  Congrats on being half way through chemo!  Yes, I found fatigue was the biggest side effect from treatment.  It's hard to explain to others that haven't gone through chemo how exhausting you can feel.  I remember just walking up a flight of stairs felt like climbing a mountain.  It does get better once treatment ends. 

Donna

DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15

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Melanie View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Melanie Quote  Post ReplyReply Direct Link To This Post Posted: Aug 07 2019 at 1:50pm
Hi strong together, 
Iím in north coast NSW. Very close! Sorry to hear about your diagnosis but great your scan is clear. I have just had my first chemo dose two days ago. Full on, went to work the next day very fatigued. However also suffering some insomnia which isnít helping. I am finding some foods are making my stomach acidic and uncomfortable. Has anyone found anything to avoid. Iím thinking of giving up my beloved coffee and Greek yogurt as well. I think it triggered it today. 
Let me know any tips. You are a little further along. Are you trying the ice cap? I am but I felt very unsettled with it. 
Mel 
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Laurarev Quote  Post ReplyReply Direct Link To This Post Posted: Aug 07 2019 at 6:10pm
my nurses told me that the hair follicles donít stand a chance with the AC chemo... even with the ice cap. But I guess itís worth a try. I hope it works for you!

So, I saw the pulmonologist today. He is ordering another ct scan STAT. I will go first thing in the morning. He said there is a lot of blood still pooling around the lung. He took a chest X-ray in his office. He agrees that big mistakes were made. I should have had a pulmonologist consult and the blood should have been drained prior to chemo.  Now my immune system is compromised but we still have to deal with this immediately. He called my Oncologistís office and had them pull him from a patient to talk to him right away. Questioned him on everything. He does not think I was in any condition to start the chemotherapy last Monday, and heís unsure Iíll be ready for my second dose next week. He wants to read the new ct scan tomorrow and discuss it with my oncologist and then make a plan from there. He said the condition is severe and serious and the blood is abundant! He said one of the problems is I look young, healthy, pretty, and not in distress. My oxygen level is good... but internally Iím a mess. Stay tuned! 
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Aug 07 2019 at 8:21pm
Laurarev,

I'm so sorry (and mad) that you are dealing with this medical issue because mistakes were made.  It seems like your new pulmonologist is on top of the situation and hopefully can get this problem resolved. 

Donna
DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15

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123Donna View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Aug 07 2019 at 8:25pm
Melanie,

When I had chemo the first time, it tore up my stomach.  My onc had me on Pepcid-AC, but still I couldn't tolerate tomato or spicey foods, certain fruits like peaches, coffee, etc.  I joked that all I wanted/could eat was "white" food like vanilla yogurt, applesauce, turkey.  I'm a big coffee drinker and couldn't stand it during treatment.  The good news was once I finished chemo, I was able to eat my normal foods again. 
DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15

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strongtogether View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote strongtogether Quote  Post ReplyReply Direct Link To This Post Posted: Aug 10 2019 at 3:46am
Hi Melanie,
I have just decided to ditch the cold cap and embrace the freedom of not having hair - for a while anyway! 
It will grow back, and I have a good wig!
 The insomnia really sucks. 
 What chemo regimen have they got you on?
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Laurarev View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Laurarev Quote  Post ReplyReply Direct Link To This Post Posted: Aug 16 2019 at 1:17pm
hi everyone! Just thought Iíd check in and update you all. Well Iíve completed my 2nd round of AC, so Iím halfway through. Iím doing better than the last time, so Iíll take that as a blessing!   Unfortunately the nurse had to stop the Adriamycin syringe very close to the end of injection because I felt a heavy sharp pain in the middle of my chest and pressure in my head behind my eyes. My oncologist ordered an echocardiogram which I had done yestrday. On the bright side, the nausea and cramping is MUCH less this time. I think I can thank the Sancuso patch and the visbiome probiotic for that! My head pain is much milder as well, and the hemothorax seems to be getting ever so slightly better (but Iíll take it!) Iím having a lot of back pain this time though. My doctor thinks itís probably  from the on pro. Although I thought that causes bone pain and this feels kind of muscular. Only on one side and in the middle part of my back. Anyone have any helpful hints. Doc just said to take 3 Motrin. 
One more question. For those of you that have had AC and then moved onto taxol... did you have a much easier time with the taxol? Iím really really hoping that will be the case foe me. 
Thavks for listening. I hope you are all doing well and of course having more good days than bad! ❌⭕️❤️😘
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Marymom Quote  Post ReplyReply Direct Link To This Post Posted: Aug 16 2019 at 4:09pm
Hi...taxol was much easier for me.  I was like my old self!  With AC, I never got sick.  I slept for days!  I would get out of bed, do one or two things and go back to bed for another eight hours.  Oddly enough, I was never a sleeper.  Maybe I would sleep four hours a night...so, I think I just caught up on 56 years of owed sleep!

So, be well and know that you are prayed for.  My prayers always include my forum friends.  Prayers gladly accepted Here!

As Ever, marymom!
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Laurarev Quote  Post ReplyReply Direct Link To This Post Posted: Aug 22 2019 at 9:32pm
hi everyone... I hope youíre all doing well! Iím hanging in there  I have a new question that maybe some of you can answer. As you all know, chemotherapy is the gift that keeps giving! And with it comes all sorts of new ďailmentsĒ.
 So Iíve got two AC treatments under my belt, and Iíve got two more to go. I think Iíve experienced every horrible side effect imaginable. The latest one is muscle pain. It is severe, and itís only on the right side of my middle back. Iíve read that the side you get treatment on could be associated with the side you feel more pain on. My port is on my right side... so is my breast cancer. I was experiencing very bad nausea, so my doctor ordered me the Sancuso patch this last go around. (It really helped!) The patch was put on my left arm, so the neulasta On Probwas put on my right arm, which is the same side it was on the first round of chemo. So Iím thinking that maybe the pain on the right side of my middle back is associated with the side Iím getting the AC AND the side I have the neulasta On Pro patch on. So hereís my question. Do you think I should switch the Sancuso patch to the right and the neulasta On Pro patch to the left for my next treatment on Monday? My concern is that then I may still be feeling residual pain on the right side, and now have new pain on the left! So pain on BOTH sides!! Eek Or if I keep things the way they were, I may have even WORSE pain on the right side, being that I compiled it with the neulasta On Pro patch being out there for three treatments in a row.  Iím just not sure which makes more sense. Any advice would be greatly appreciated!! (And on a side note... does anyone know if we still wear the neulasta On Pro patch when chemo gets switched over to Taxol?)
Thanks in advance for your replies. 🤗
Laura 
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Kellyless Quote  Post ReplyReply Direct Link To This Post Posted: Aug 23 2019 at 1:17am
I've not heard the pain is related to the location of the Neulasta shot. If the pain is from your cancer treatment and not related to your port nightmare, then it is probably from Neulasta. I did not do the on pro, I went to the hospital the day after and got the shots in my upper thigh or hip/butt. I did have bone pain and it just plain sucked. I took real pain meds on the bad days, hydrocodone, and it worked like a champ. 
If you're doing Taxol weekly you can't do Neulasta, as it's a two week cycle drug. The weekly taxols are typically easier on your white count, but if it is a problem you would do neupogen. A similar drug, a series of shots for three days. I think the bone pain is less, but everyone is different. Hopefully you won't  need it! But it's there if you do. 
IDC, 2.2 cm, Stage IIb,lumpectomy 1/30/09 ACx4,Tx4 36 rads
6/1/16 Local recurrence same breast, same spot 1.8cm Carb.4x every 3 wks, Taxol 12x once wk. Dbl Mast. PCR!! Reconstruction fail, NED!
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Post Options Post Options   Thanks (0) Thanks(0)   Quote strongtogether Quote  Post ReplyReply Direct Link To This Post Posted: Aug 23 2019 at 6:54am
One more AC to go..... so excited for that to be over! 
 I am trying to understand something - maybe @kellyless will know!
 If you have a Pathologic complete response, theres a very good chance you dont get recurrence. I understand that, it makes perfect sense. Essentially, the chemo killed virtually all the Cancer in the tumour and it makes sense that any stray cells would have been wiped out too. 
 What I dont understand is this - in the absence of PCR, there is still a good chance of achieving no recurrence (65% ish). .. . why is that? surely the absence of PCR would imply that some isolated C cells have survived the chemo... what happens to them? 

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Post Options Post Options   Thanks (0) Thanks(0)   Quote Kellyless Quote  Post ReplyReply Direct Link To This Post Posted: Aug 23 2019 at 9:04am
I would assume it would mean the tumor was just too big, or dense or what have you for the chemo to destroy it entirely. Our tumors, especially the high grade ones tend to be hard, physically hard, that's why going through chemo your doctor will say when she palpates them at visits that she can tell they are "softening" . Softening is good, it means cell death is occurring. it's a lot tougher to get an entire hard tumor to soften and die than small collections of tumor cells. We all went through tons of tests to make sure we had no other tumors anywhere, so other than the initial tumor itself, that's all we're after with chemo is all the other cells that can be lurking. 
And the reason so many bother with more chemo, like Xeloda, when they have no pCR is the ramifications of that 35% chance of recurrence. They don't mean a 35% chance of another breast tumor. The 35% chance of recurrence is outside the breast - stage 4. Unfortunately the stats on surviving our disease at that point are lousy. I planned on doing Xeloda last time, I was sure of it. It was the best shock of a lifetime when I didn't have to. But I had surgical complications because of radiation damage and ended up with multiple surgeries and 9 months of wound care. This disease has been the grim gift that keeps on giving for me, lol. But I still know I'm lucky to even be here :-) 
IDC, 2.2 cm, Stage IIb,lumpectomy 1/30/09 ACx4,Tx4 36 rads
6/1/16 Local recurrence same breast, same spot 1.8cm Carb.4x every 3 wks, Taxol 12x once wk. Dbl Mast. PCR!! Reconstruction fail, NED!
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Laurarev Quote  Post ReplyReply Direct Link To This Post Posted: Aug 23 2019 at 9:05am
thank you for your reply!! Maybe if I go in for the shot the day after chemo, instead of getting the On Pro patch it will be a little easier. I had only heard of BONE pain as well, so Iím not sure about this muscular pain. Itís on the opposite side of the hemothorax, so Iím just not sure whatís going on. 
Do you know if there are any advantages of doing the taxol every other week in ďdose denseĒ treatments? My oncologist seems to be pushing for this.  
So, just so I understand you correctly...  if I did the dose dense taxol I would still get the on pro patch, but if I do the taxol weekly I wonít get it. If my wbc ends up being low on the weekly taxol I would get a shot for three days called  Neupogen?

Thanks so much for your help. This is all so confusing. 
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Laurarev Quote  Post ReplyReply Direct Link To This Post Posted: Aug 23 2019 at 9:11am
oh wow! I didnít know you had surgical complications as well. Iím so sorry to hear that 😢 the whole thing sucks! The diagnosis, the surgeries, the chemo, the radiation, all of it!
I have another question after reading the previous post. Being that I did surgery to remove the tumor first, rather than chemo to shrink the tumor first.... I will never know if I have a pathological complete response. Is that correct? So where does that leave people in my situation?
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Laurarev Quote  Post ReplyReply Direct Link To This Post Posted: Aug 23 2019 at 9:14am
strongtogether,
I am so happy for you that you only have one more AC to go!!! It feels like these treatments are taking a lifetime. Do you agree? 
So will you be following the AC with taxol? If so are you doing it every week for twelve weeks, or 4 treatments every other week. How are you feeling?
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Aug 23 2019 at 10:49am
Laurarev,

I don't believe they give you Neulasta for Taxol, just AC.  The benefit of On Pro Patch for Neulasta was that you don't have to go back to the oncologist the day after chemo to get the Neulasta shot.  When I had chemo, the On Pro Patch wasn't available yet so our only choice was to make the trip a day after chemo.  It wasn't exactly what you want to do the day after chemo so I think the injectable On Pro was a great invention.

Donna
DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15

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Post Options Post Options   Thanks (0) Thanks(0)   Quote strongtogether Quote  Post ReplyReply Direct Link To This Post Posted: Aug 23 2019 at 4:07pm
Hi Lauralev,
 After AC I will roll into Taxol. It is a series of 12 weekly sessions, as well as Carboplatin every third week. 
 Everyone says it is easier than AC... here's to that!
 
Kelly, thank you for that insight. I can see how that would work. 
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Kellyless Quote  Post ReplyReply Direct Link To This Post Posted: Aug 23 2019 at 5:45pm
I believe they've proven that the Taxol weekly is as effective as the dose dense. There's a higher chance of neuropathy with dose dense, and that can be permanent. The only benefit I'm aware of is it's over in 8 weeks. I'd do the 12 weeks if i was doing it again, neuropathy is awful. 
My surgical complications were because I attempted reconstruction after I'd had radiation. Reconstruction failed and my chest is a mess. If I could go back in time I would never have tried! being flat isn't so bad for me. Of course I've been with my husband for over 31 years, he was anti reconstruction from the beginning. Oh well. I've got 3 pair of boobs that are all different. I only wear them when I go out or otherwise want to look better in my clothes. I match my boobs to my mood, or the clothes or what I'm going to be doing. :-D Insurance pays for a new pair every two years, so next year I plan on getting a much smaller pair for the collection. Insurance pays for several bras per year as well. 
Even after what I've been thru, if you've no genetic mutations and your doctor's say you've the same risk of recurrence and survival with lumpectomy and radiation as with a mastectomy, I'd do the lumpectomy 100%. I'm treated like a unicorn to this day for my rare recurrence after 7 years, it just doesn't happen. @Monarch can vouch for it. When we're at her cancer clinic the nurses and staff all ask me for the details. 
IDC, 2.2 cm, Stage IIb,lumpectomy 1/30/09 ACx4,Tx4 36 rads
6/1/16 Local recurrence same breast, same spot 1.8cm Carb.4x every 3 wks, Taxol 12x once wk. Dbl Mast. PCR!! Reconstruction fail, NED!
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Laurarev Quote  Post ReplyReply Direct Link To This Post Posted: Aug 23 2019 at 8:19pm
Oh my goodness! Iím so sorry youíve been through all that. What a mess!!  You really have a positive attitude about it though. Of course, Iím sure many years have been shed, but you sound like youíve gotten to a much better place both mentally and physically. 
When I first got diagnosed both surgeons that I met with said it was my choice to either do a double mastectomy or a lumpectomy. I didnít understand why it would be MY choice. Was one better than the other as far as my chances of survival? They said that the mastectomy was not a guarantee that the cancer wouldnít come back. They said it could still come back to the chest wall even if I had the breast tissue removed. I was told my lump was so small, it was a fine choice to get the lumpectomy. It wasnít until after the surgery that I also found out I do not have any genetic mutations, so that was not a deciding factor... but thank God! One of the surgeons had said ďsome women feel their breasts have betrayed them and they just want them off!Ē  Well I figured if it wasnít a guarantee that the cancer wasnít going to come back... why put myself through that surgery. 
But I did have a teacher friend at work who had just finished chemo and radiation. She was starting to go to group meetings and one of the girls at her meetings was also a nurse. The nurse said it bothered her so much that the doctors arenít telling their patients how difficult it is to have reconstruction after radiation. She said the radiation tightens and shrinks the skin so much it makes it very difficult to implant a fake breast. My friend said she wishes she had known that. She would have just had the double mastectomy. At the time I just wanted my lumpectomy surgery to happen and to get the cancer cut out of me! But now after hearing your story I wonder if I should have done the double mastectomy. 
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Laurarev Quote  Post ReplyReply Direct Link To This Post Posted: Aug 23 2019 at 8:21pm
Strong together,

That is what I keep hearing too. Lord I hope so!! I  going to have a long talk with my doctor about the 12 weekly sessions vs the dose dense 4 sessions. If itís just about the extra 4 weeks, I have no problem with it. If itís going to be easier on my most, Iíll take it!! It seems to be the norm for everyone anyhow.
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