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Topic: Kadcyla for residual disease after neo adjuvant chemo

Forum: HER2+ (Positive) Breast Cancer —

Testing, treatment, side effects, and more.

Posted on: Oct 30, 2019 12:20PM

neeli wrote:

Hi All,

Starting a new Kadcyla thread as there wasn't one before. I will be starting Kadcyla soon as there was residual disease from surgery pathology report. Kadcyla for 14 cycles is what is recommended. Any of you who have already been on Kadcyla please share how it is going for you.

Dx 4/24/2019, DCIS/IDC, Right, Grade 3, 3/10 nodes, ER+/PR+, HER2+ (IHC) Chemotherapy 6/5/2019 Carboplatin (Paraplatin), Taxotere (docetaxel) Targeted Therapy 6/5/2019 Herceptin (trastuzumab) Targeted Therapy 6/5/2019 Perjeta (pertuzumab) Surgery 10/16/2019 Mastectomy: Right Targeted Therapy 11/6/2019 Kadcyla (T-DM1, ado-trastuzumab) Radiation Therapy 12/5/2019 Whole-breast: Breast, Chest wall
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Mar 25, 2021 06:15PM morrigan_2575 wrote:

i just got 13 of 14. I feel fine but, I have noticed the impact to my blood counts does seem cumulative. I need Neulasta every cycle now just to keep my ANC at 1.2. My Platlets have stopped rebounding. I would usually hang around 100 but now I'm 79.

Ah well, it's almost over with 😃

Dx 1/20/2020, DCIS/IDC, Right, 4cm, Stage IIA, Grade 2, ER+/PR+, HER2+ (IHC) Chemotherapy 2/4/2020 Carboplatin (Paraplatin), Taxotere (docetaxel) Targeted Therapy 2/4/2020 Herceptin (trastuzumab) Targeted Therapy 2/4/2020 Perjeta (pertuzumab) Surgery 6/18/2020 Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Dx 6/19/2020, DCIS/IDC, Right, <1cm, Stage IA, Grade 2, 1/3 nodes, ER+/PR+, HER2+ Targeted Therapy 7/5/2020 Kadcyla (T-DM1, ado-trastuzumab) Radiation Therapy 8/9/2020 Whole-breast: Breast, Lymph nodes, Chest wall
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Mar 25, 2021 06:21PM YesIamaDragon wrote:

I had to take a break after #6 because my neuropathy got so bad. Still think it was still worsening from the Docetaxol. I was super frustrated at the time to be taken off the perjata and not started on the Kadcyla during radiation, but now I am really glad, because the radiation alone was fatiguing enough, and I still needed to work. The Kadcyla was fatiguing, but my platelets did OK. My hemoglobin is still low, and my white count was a little low throughout but that has come back. My hemoglobin may be slower to come back just because I am a long-time vegetarian.

I did have the herceptin runny nose right through the kadcyla, but that is FINALLY getting better. Also a dry cough, but chest CT looked ok.

I am sorry you are struggling, but if it doesn't work out perhaps neratinib would be a tolerable aternative?

Dx 6/2019, IDC, Right, 2cm, Grade 2, ER+/PR+, HER2+ Hormonal Therapy Arimidex (anastrozole) Radiation Therapy Targeted Therapy Kadcyla (T-DM1, ado-trastuzumab) Surgery Chemotherapy Carboplatin (Paraplatin), Taxotere (docetaxel) Targeted Therapy Perjeta (pertuzumab) Targeted Therapy Herceptin (trastuzumab)
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Mar 29, 2021 08:39PM Racheldog wrote:

My goodness, thank you for all who shared their experiences on Kadcyla which was supposed to be "easy." I am not a Facebook person but there is a Kadcyla group and from what I could see without joining many others are having issues. The cough, dry mouth, fatigue, acid refux, etc is somewhat tolerable but the off and on tachycardia, shortness of breath, dizzy, etc is NOT. I have had 4 infusions and was a healthy older person and in 3 months I feel like this drug is going to cause worse issues. I have lost 16 pounds. Another person I know on Kadcyla has lost 45 pounds! I have been eating ok on the "good days" but the nadir phase seems to be getting longer and longer. I may stop this. I do not want irreversible heart failure from this, plus my tumor was very small. Her 2+ was the stink of all this.

I did start on potassium and magnesium and am trying to hydrate. What irks me is the place I am going to for infusions did NOT figure that out and I was the one who did along with my primary care doctor. I have a 2nd opinion new oncologist this week and I will discuss this risk benefit of this drug with her. I am supposed to start radiation and was told by the first oncologist that I could do that concurrently. NO way will I do that and have to drive myself for 3-4 weeks when I feel so awful. That is scary too with the risk of lung issues or heart issues with radiation. And adding aromotase inhibitors at the same time? What are they thinking?

Again, I thank everyone for sharing that Kadcyla is no walk in the park. For those who can tolerate it, that is good. I am at a crossroad with quality of life and risk/benefit of this drug causing another bad medical issue.

Dx 9/2020, IDC, Left, <1cm, Stage IA, Grade 3, ER+/PR+, HER2+ (IHC) Radiation Therapy Whole-breast Chemotherapy Other Surgery Lumpectomy: Left
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Apr 1, 2021 06:25AM Rivergirl1911 wrote:

I get my Kadcyla over 60 minutes and it has made a big difference with regard to nausea. No harm in asking

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Apr 12, 2021 05:31PM jaymarg wrote:

Hi Everyone,

Last week I had number 14. I am so pleased to have got through them. I found it tough on account of the level of fatigue I experienced. It started at number 2 after the radiation. Here in UK the radiation is given now in 5 days so I followed with Kadcyla on day 6. I gave myself a target, first of all, to get to number 7, half way. Then when I was there, my next target was number 10. I got to 9 and the pins and needles in my fingers and toes turned to pain and I found I couldn't write and had difficulty pressing light switches or buttons on the washing machine for example. I was told I needed a break which was for 3 weeks and my dose was reduced by 20% to make the pain manageable. This has helped considerably and enabled me to complete the rest of the cycles. I do not know whether the pain in my fingers will resolve itself eventually. I hope so. I read an article on this website about neuropathy generally by a Dr Stubblefield where he appeared to say in only 5% of cases it is permanent. I have not yet been prescribed an AI. I am told that I will be starting Letrozole in June.

I think that everyone undergoing chemotherapy is brave and a star. It takes guts to go for each cycle. The residual cancer after surgery, for me, made it that I didn't have a choice other than to go for Kadcyla and to give it my best shot. Everyone is unique and needs to do what is best for them.

I am very grateful for the postings about the vaccine. I have a couple of questions you might help me with and I will post these separately.


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Apr 12, 2021 07:48PM morrigan_2575 wrote:

Congratulations on finishing!

Dx 1/20/2020, DCIS/IDC, Right, 4cm, Stage IIA, Grade 2, ER+/PR+, HER2+ (IHC) Chemotherapy 2/4/2020 Carboplatin (Paraplatin), Taxotere (docetaxel) Targeted Therapy 2/4/2020 Herceptin (trastuzumab) Targeted Therapy 2/4/2020 Perjeta (pertuzumab) Surgery 6/18/2020 Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Dx 6/19/2020, DCIS/IDC, Right, <1cm, Stage IA, Grade 2, 1/3 nodes, ER+/PR+, HER2+ Targeted Therapy 7/5/2020 Kadcyla (T-DM1, ado-trastuzumab) Radiation Therapy 8/9/2020 Whole-breast: Breast, Lymph nodes, Chest wall
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Apr 12, 2021 07:58PM YesIamaDragon wrote:

I finished the Kadcyla in December (well, New Year's Eve!) after also needing dose reduction due to the neuropathic pain. It is getting better for sure, but my balance still sucks.

Dx 6/2019, IDC, Right, 2cm, Grade 2, ER+/PR+, HER2+ Hormonal Therapy Arimidex (anastrozole) Radiation Therapy Targeted Therapy Kadcyla (T-DM1, ado-trastuzumab) Surgery Chemotherapy Carboplatin (Paraplatin), Taxotere (docetaxel) Targeted Therapy Perjeta (pertuzumab) Targeted Therapy Herceptin (trastuzumab)
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Apr 15, 2021 11:00AM morrigan_2575 wrote:

Just had #14 this morning. Kadcyla has treated me well, yet I'm still happy to be done with it.

Dx 1/20/2020, DCIS/IDC, Right, 4cm, Stage IIA, Grade 2, ER+/PR+, HER2+ (IHC) Chemotherapy 2/4/2020 Carboplatin (Paraplatin), Taxotere (docetaxel) Targeted Therapy 2/4/2020 Herceptin (trastuzumab) Targeted Therapy 2/4/2020 Perjeta (pertuzumab) Surgery 6/18/2020 Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Dx 6/19/2020, DCIS/IDC, Right, <1cm, Stage IA, Grade 2, 1/3 nodes, ER+/PR+, HER2+ Targeted Therapy 7/5/2020 Kadcyla (T-DM1, ado-trastuzumab) Radiation Therapy 8/9/2020 Whole-breast: Breast, Lymph nodes, Chest wall
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Apr 15, 2021 07:38PM YesIamaDragon wrote:

CONGRATULATIONS!

Dx 6/2019, IDC, Right, 2cm, Grade 2, ER+/PR+, HER2+ Hormonal Therapy Arimidex (anastrozole) Radiation Therapy Targeted Therapy Kadcyla (T-DM1, ado-trastuzumab) Surgery Chemotherapy Carboplatin (Paraplatin), Taxotere (docetaxel) Targeted Therapy Perjeta (pertuzumab) Targeted Therapy Herceptin (trastuzumab)
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Apr 17, 2021 10:18PM Flowerkid wrote:

Morrigan25

Great to be done! Congrats!!


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Apr 23, 2021 08:58PM Spalta wrote:

Hi Rachel nice to see someone else also who has received KAdcyla for early HEr2 BC, as so is my mom right now. My mom has alotnof the symptoms you described and I am hoping she gets better after she is done all her cycles.

cheers

Sonia

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Apr 23, 2021 11:35PM Racheldog wrote:

Hi Spalta/Sonia,

Well, I quit Kadcyla and have been off that chemo for 4 weeks now. I ended up having a chest CT and had to see a Pulmonologist. I have been a lifetime non smoker , no asthma and never had any lung issues. No way was I going to be a pulmonary cripple for the rest of my life, I am just now back to feeling like myself and lung issues are improving. So many chemo drugs cause Pulmonary issues. I repeat, that Kadcyla was no walk in the park. For those that tolerate it they are fortunate.

I may retry just the Herceptin alone but if that causes issues , will stop. This is all a risk benefit, especially for older women. This lousy Her2+.

Be interested to hear from other women who just did Herceptin as mono therapy and how they are doing without side effects?

Dx 9/2020, IDC, Left, <1cm, Stage IA, Grade 3, ER+/PR+, HER2+ (IHC) Radiation Therapy Whole-breast Chemotherapy Other Surgery Lumpectomy: Left
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May 8, 2021 08:29AM dontwantthis wrote:

Hi,

I am hoping you might give me your opinion please.

I was diagnosed in 2006 at 47 years old (pre menopause) with invasive ductile carcinoma in my right breast. I was grade 1, stage 3 (1.6cm) with surrounding (insitu), ER/PR- very HER2 positive (8 nodes removed all negative).

In January 2007 I had a lumpectomy, margins were clear. Treatment was 4 cycles of AC (given byweekly), Herceptin given every 3 weeks for one year) the Taxol, Herceptin 25 rounds of radiation (all started at the same time).

In January 2021 during my annual mammogram a mass was found, after my biopsy it was found that I had the identical cancer, same side very close to the first tumor (this one just under 1cm).

Since I had previously had AC and radiation, the course was a mastectomy (I chose bilateral). The treatment plan was 12 cycles of Taxol (given weekly and Herceptin, 12 rounds weekly with the Taxol), followed by 9 months given every 3 weeks.

Given all these details, and the fact that my Oncogists last words to me last time, I won't have to see you again! I wonder if I should consider doing the Taxol, Herceptin and T-DM1. Clearly the Herceptin has shown up twice (it was caught early), but I don't want history to repeat itself).

I assume that doing the bilateral mastectomy has greatly reduced an occurrence, but what would your thoughts be?

Cheers,


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May 8, 2021 01:20PM morrigan_2575 wrote:

In the US Kadcyla is only approved (in early stage BC) to treat residual disease post neoadjuvant treatment. I'm not sure about anywhere else.

Personally, I had a fairly easy time on Kadcyla, minimal SEs and nothing difficult to handle. I know others have a much harder time with Kadcyla. I would recommend Kadcyla over Herceptin because of the KATHERINE trial but, 10.5 months of Kadcyla could be difficult if you're one of the unlucky ones

Dx 1/20/2020, DCIS/IDC, Right, 4cm, Stage IIA, Grade 2, ER+/PR+, HER2+ (IHC) Chemotherapy 2/4/2020 Carboplatin (Paraplatin), Taxotere (docetaxel) Targeted Therapy 2/4/2020 Herceptin (trastuzumab) Targeted Therapy 2/4/2020 Perjeta (pertuzumab) Surgery 6/18/2020 Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Dx 6/19/2020, DCIS/IDC, Right, <1cm, Stage IA, Grade 2, 1/3 nodes, ER+/PR+, HER2+ Targeted Therapy 7/5/2020 Kadcyla (T-DM1, ado-trastuzumab) Radiation Therapy 8/9/2020 Whole-breast: Breast, Lymph nodes, Chest wall
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May 12, 2021 12:23PM Racheldog wrote:

I was one of the unlucky ones. Five months ago healthy and active. Never in my life had any lung issues. I could only do 4 rounds of Kadcyla.and then became sick with interstitial lung disease starting. So, so many of these newer chemo drugs out there now have lung issues (not just cardiac) and one of my oncologist failed to recognize this despite shortness of breath , daily fevers, and general unwellness. I have one as a second opinion onc who suspected right away and I stopped. Was fortunate enough not to have to go on steroids and I improved on my own over at least 6 weeks. Now I am faced with Herceptin only as monotherapy and am terrified of the re-challenge of even this drug as there are reports of interstitial lung problems with this. I am early stage BC but HER2+ so this is a major concern if I don't attempt this infusion. I am not willing to risk my health and life to re-test any drug which could cause lung issues permanently. Everyone has to decide for themselves at what age you are and what decision tree to follow. I started a separate post on Herceptin only and want to find out if others had lung issues.

Dx 9/2020, IDC, Left, <1cm, Stage IA, Grade 3, ER+/PR+, HER2+ (IHC) Radiation Therapy Whole-breast Chemotherapy Other Surgery Lumpectomy: Left
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Aug 15, 2021 09:12AM JamG wrote:

Hi, Everyone, this thread has been so helpful to me. I had my first Kadcyla infusion on Wednesday, and so far my only symptom until last night was fatigue. Last night, however, I started feeling some neuropathy (tingling) in my hands/fest. So I'm on here today to see what I can do to hopefully manage it. I'm seeing info for B12, Magnesium, ALA, and L-Glutamine. I'm wondering if anyone iced during their Kadcyla infusions?? I didn't during TCHP (I HATE cold), but I didn't have neuropathy issues either. Would love any suggestions you have! Thanks!

Dx 3/3/2021, IDC, Left, 2cm, Stage IIA, Grade 2, ER+/PR+, HER2+ (IHC) Targeted Therapy 3/16/2021 Perjeta (pertuzumab) Targeted Therapy 3/17/2021 Herceptin (trastuzumab) Chemotherapy 3/17/2021 Carboplatin (Paraplatin), Taxotere (docetaxel) Surgery 7/27/2021 Lumpectomy: Left; Lymph node removal: Left, Sentinel, Underarm/Axillary
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Aug 15, 2021 10:34AM morrigan_2575 wrote:

I iced for TCHP but, not Kadcyla. I took B6 and ALA during both treatments and no Neuropathy

Dx 1/20/2020, DCIS/IDC, Right, 4cm, Stage IIA, Grade 2, ER+/PR+, HER2+ (IHC) Chemotherapy 2/4/2020 Carboplatin (Paraplatin), Taxotere (docetaxel) Targeted Therapy 2/4/2020 Herceptin (trastuzumab) Targeted Therapy 2/4/2020 Perjeta (pertuzumab) Surgery 6/18/2020 Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Dx 6/19/2020, DCIS/IDC, Right, <1cm, Stage IA, Grade 2, 1/3 nodes, ER+/PR+, HER2+ Targeted Therapy 7/5/2020 Kadcyla (T-DM1, ado-trastuzumab) Radiation Therapy 8/9/2020 Whole-breast: Breast, Lymph nodes, Chest wall
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Aug 15, 2021 12:26PM Racheldog wrote:

Please be informed and be very careful about supplements during chemo. I met with a University nutritionist and two oncologists. ALA is considered an antioxidant and (possibly B6 as it acts with free radicals) all advised against supplementation other than diet. During chemo I did nothing! Not advised during radiation either. I hated not taking vitamins, but after my own research and listening to the experts I took nothing. Read only current information and studies. Yes, it is all over the place in recommendations but vitamin companies often want to sell or promote their products. Plus I only trust a few reputable companies.

Talk to your team, and not to offend, but not all the advice or plans that others did on these forums. Early on when I started these groups I got a private message from another cancer patient who said the same thing to me about advice on these forums. Wishing you well on Kadcyla and your own journey.

Dx 9/2020, IDC, Left, <1cm, Stage IA, Grade 3, ER+/PR+, HER2+ (IHC) Radiation Therapy Whole-breast Chemotherapy Other Surgery Lumpectomy: Left
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Aug 15, 2021 03:01PM - edited Aug 15, 2021 03:04PM by morrigan_2575

My Oncologist put me on both during TCHP. I only had to stop doing ALA while doing radiation and both Oncologist signed off on when to start up again. In fact both MO and RO signed off on everything I take.

Dx 1/20/2020, DCIS/IDC, Right, 4cm, Stage IIA, Grade 2, ER+/PR+, HER2+ (IHC) Chemotherapy 2/4/2020 Carboplatin (Paraplatin), Taxotere (docetaxel) Targeted Therapy 2/4/2020 Herceptin (trastuzumab) Targeted Therapy 2/4/2020 Perjeta (pertuzumab) Surgery 6/18/2020 Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Dx 6/19/2020, DCIS/IDC, Right, <1cm, Stage IA, Grade 2, 1/3 nodes, ER+/PR+, HER2+ Targeted Therapy 7/5/2020 Kadcyla (T-DM1, ado-trastuzumab) Radiation Therapy 8/9/2020 Whole-breast: Breast, Lymph nodes, Chest wall
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Aug 19, 2021 10:50PM JamG wrote:

Thanks for getting back to me on the questions of icing and supplements for neuropathy! I've send messages to my team so they can weigh in too, and I'll do what they suggest. -JamG

Dx 3/3/2021, IDC, Left, 2cm, Stage IIA, Grade 2, ER+/PR+, HER2+ (IHC) Targeted Therapy 3/16/2021 Perjeta (pertuzumab) Targeted Therapy 3/17/2021 Herceptin (trastuzumab) Chemotherapy 3/17/2021 Carboplatin (Paraplatin), Taxotere (docetaxel) Surgery 7/27/2021 Lumpectomy: Left; Lymph node removal: Left, Sentinel, Underarm/Axillary
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Aug 19, 2021 11:34PM Flowerkid wrote:

I also iced during TCHP and not kadcyla. No supplements other than glutamine. And kadcyla wasn't nearly as bad as I was anticipating.

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Aug 25, 2021 02:43AM Imani wrote:

I'm supposed to have my 5th kadcyla this Friday but I think I may have to be switched to herceptin. My neuropathy is so bad on my feet that I am limping when I walk.

Will update once I speak to my oncologist

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Sep 14, 2021 05:40PM idkwhatsnext wrote:

Just an update: I didn't have any side effects besides a little reflux for the first 8 infusions, all of which I did for 60 min and with hydration, but after the 9th infusion, I started to feel nauseous and have more reflux than previously. I'm hoping it doesn't keep getting worse.

Dx 8/27/2020, Left: IDC + Calc, 5+cm, Right: LCIS, 0/5 nodes, ER+/PR+, HER2++, Grade 3 Targeted Therapy 10/9/2020 Herceptin (trastuzumab) Targeted Therapy 10/9/2020 Perjeta (pertuzumab) Chemotherapy 10/9/2020 Carboplatin (Paraplatin), Taxotere (docetaxel) Surgery 2/25/2021 Mastectomy: Left; Prophylactic mastectomy: Right Targeted Therapy 3/26/2021 Kadcyla (T-DM1, ado-trastuzumab)
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Sep 15, 2021 10:15AM morrigan_2575 wrote:

@idkwhatsbext - please let me know how the rest go for you. I had something similar with cycle 7, I was fine with 1-6, minor SEs nothing i couldn't handle and all easily treated. Then with 7 I got major toe pain (neuropathy) and some really bad joint pain (shoulder) plus fatigue. Then cycle 8-14 were back to normal. It was a very weird drug, IMO.

Best of luck! Hopefully the rest of the treatment goes well for you

Dx 1/20/2020, DCIS/IDC, Right, 4cm, Stage IIA, Grade 2, ER+/PR+, HER2+ (IHC) Chemotherapy 2/4/2020 Carboplatin (Paraplatin), Taxotere (docetaxel) Targeted Therapy 2/4/2020 Herceptin (trastuzumab) Targeted Therapy 2/4/2020 Perjeta (pertuzumab) Surgery 6/18/2020 Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Dx 6/19/2020, DCIS/IDC, Right, <1cm, Stage IA, Grade 2, 1/3 nodes, ER+/PR+, HER2+ Targeted Therapy 7/5/2020 Kadcyla (T-DM1, ado-trastuzumab) Radiation Therapy 8/9/2020 Whole-breast: Breast, Lymph nodes, Chest wall

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