TRIPLE POSITIVE GROUP

Hi all. I started my chemo last Monday 27th - weekly Taxol and Herceptin. No digestive problems thankfully but I feel achy in my muscles and have lost power generally throughout my body. I walk and do a small exercise routine every day but I feel really sore/stiff afterwards. Did anyone have this problem and is it from the Taxol or Herceptin. Is there anything I can ask them to do next Monday to make it better so I don't have more pain. I'm frightened its going to get worse.

Shelabela - I also broke out with pimples on my face durning chemo. Ask your MO to prescribe some antibiotic acne wipes. They will help.

Hi Elizabeth7. I just finished round 5 of taxol/herceptin. I only had the sore achy body on round 2 (but everything was worse then). Because I am "old" and "arthritic" I do take arthritis tylenol (my spell check isn't working on these medical words) which may be helping with the chemo aches. Weather permitting I have been able to play 9 holes of golf 2 or 3 times a week and walk our dog with no discomfort. Are you drinking enough liquid? I started drinking the flavored selzer since I couldn't make myself drink enough water. I know there are real proponents of juicing more vegetables on these threads but I admit I haven't changed my diet much. And I was delighted to have the PA say I needed more protein when I was there Friday.

WE CAN DO THIS!

Hi all. It just dawned on me that with neoadjuvant treatment and mostly sketchy staging before surgery, the path forward when you are doing TCHP is very murky. It feels like a giant clinical trial. A PCR is less likely when ER/PR +. The anxiety of the radiation, surgery, reconstruction, another 9 months of Herceptin and the 10 years of hormonal therapy steps are wearing me down.

Now that the hurry up and wait of biopsies, diagnosis, and initial treatment plan are behind me, I am second guessing everything. I am wondering if surgery first would not have been better because I think by the time surgery comes around, I am going to be spent from the first 6 rounds. I can't be making big decisions about reconstruction at that point. The tissue expanders sound horrible. The fat grafting sounds more invasive and risky. Pain, loss of mobility, risk of infection, shelf life of implants are making the surgery decisions, yes multiple surgery decisions, difficult to consider.

The first surgery is already a roll of the dice since you go in not knowing your node status or radiation requirements. The surgery plan is just a plan. You could wake up in a completely different situation. This uncertainty creates an anxiety level that yoga, meditation, adivan or the tread mill are notgoing to mitigate.

The neoadjuvant treatment model of TCHP for early stage adds complexity to this process. And when the option of a lumpectomy gets pulled off the table, then the fun really starts. I guess the only upside is that I found that out earlier, rather than upon waking up from surgery.

Yep, we are triple positive. We are different. That is for sure. Thanks for listening.

I did the adjunctive route, lumpectomy first, but I had close margins and knew going into chemo that I would need a second surgery after the first six rounds were finished. I was happy to have the additional time to really consider my options.

After much consideration and multiples meetings with 2 different PS, I did bmx with immediate DIEP recon. Although surgery after chemo was no picnic, I think it was better than having it the other way around. After surgery, I could just lay in bed and recover from both the surgery and the chemo. It would have been grueling to have to do the chemo while still recovering from such an extensive surgery.

Good luck to you throughout the rest of your treatment. I'm three years out. It does get better!

silly question here.do you still use shampoo for your scalp after all the hair has fallen/shaved? anything you used for scalp care?thanks

thanks elaine

Suburbs - I'm with you on this. After 6 months of treatment and no visible cancer on my recent MRI, I was expecting a lumpectomy. Surgeon told me mastectomy was the safest option because my tumors were too far apart so lumpectomy was never an option. I don't quite understand the benefit of HP before surgery as I thought the objective was to shrink the tumor so lumpectomy was possible. All this is very confusing and really dependent on the MO's treatment strategy. Don't get me wrong, I am very grateful for the opportunity to be participating in a clinical trial that offers a chemo alternative. I am struggling with the decision to do a single vs double mastectomy. The fear of recurrence is what makes the decision tough especially not knowing node status. Murky is a good word to describe how things appear prior to surgery. I do appreciate the input from all the ladies here who had surgery first; it certainly is helpful to have different views to ponder.

Wishing you the best, hang tough!

How do you take L- glutamine during chemo? 10 g three times a day all throughout? have not discussed this with my MO and i will when i see her next.thanks

Hi ElaineThere, because of the DCIS/IDC diagnosis and the distance between the two sites, my triple positive is multi-centric or multi-focal or multi-focused. The skin saving and sparing lumpectomy are not recommended in this situation. Add the node status unknown and the UMX becomes less desirable since radiation would make an implant delayed or possibly unsuccessful. So with a BMX, worst case scenario and I say this with formidable positivity since no surgery is without risk, one would be left with symmetry. The go or no go facet of radiation treatment is the wild card that I did not fully grasp. Of course, when your mind is a bit wild from the steroids to fight back the perjeta rash, I know I sound a bit crazy. And clearly, others here on these boards have much larger issues they are fighting, so I feel a bit selfish and thank everyone for their indulgence. It must be apparent that I have never been to Las Vegas. : )

On the subject of PCR and NED, the goal of neoadjuvant TCHP therapy, the two hematomas from my biopsies are still huge and exponentially greater in size than the lump that was never felt. I think I have heard these hematomas can linger for months and may even still be there at the time of surgery. Has anyone else experienced this same condition

Ah, suburbs -- did not realize that you were multi-focal. I had a giant hematoma after my lumpectomy, and my surgeon eventually drained it. My radiation oncologist refused to begin radiation until it was drained. I suppose you could ask for yours to be drained as well. Some BC patients have relatively easy reconstruction processes, but yes, some end up with multiple procedures. I have to say that I never knew that reconstruction was so involved until I started reading on this site. However, it's important to note that the women with complications are over represented here. After all, if you have an easy go of it, you don't need to post about it. Best wishes!

My heart goes out to all of you on this board. It is hard to even express how much it goes out to each and everyone of you in words.

My lump I found turned out to be "fat". I am beyond relieved but it took almost a week for my doctor to call me back to let me know. He also kindly explained that the first time is the worst time for this type of recurrence fright. I hope he is right. My biggest problem during this ordeal, during and after has been one member of my family, my brother, the person I have always helped, loved and listen to. Pure anger. "I am his only problem". He is so full of hate it just broke me down completely even more than the scare of the lump and my own fear.I used my last strength to tell him off which made him even more angry. Why worry him about something that was not anything? His reaction and lack of empathy made me almost want to take my own life (I am not going to) but needed some strong medication to even be able to breath. His biggest problem is me apparently. I am a burden and it just kept going with etc. I understand he is having some serious issues of his own, but he does not want to adress them and continue to blame others, now everything is my fault. His reaction has just been such a chock I can´t for my life get over it. I will never get over it. I lost my brother. Did anyone else have this experience from a loved one? I just can not feel any love towards him anymore and that hurts more than this cancer at the moment, such a nightmare in itself. I am for sure all by myself. Me and my cats. To find the strength to even ask for help is hard to find after this revelation about the person I thought I could always trust and I thought loved me. He doesn´t.

Kattis, that truly sucks about your brother. I'm happy to hear your new lump was just fat! I was wondering about how you were doing.

I know something of what you are feeling with regard to your brother. Breast cancer is not the worst thing that's ever happened to me. My mother had three emotionally abusive husbands and did not stick up for me and my little sister. She was also the local leader of an obscure religious cult. When i was 16 the third husband threatened to kill me. I moved out and lived with my grandmother, then moved out on my own when i was 17. (Didn't speak to my mother for >20 years until the diagnosis, and then just to ask about family history.) My twenties truly sucked. Post-traumatic stress disorder, anxiety, depression, often dire financial stress. Good friendships and moments of glory for sure, but a very painful time in general. There is something particularly excruciating about being betrayed by someone who you thought was supposed to love you.

I don't have anything to say to help you feel better, but just know you are not alone in that experience. Time helps. Psychotherapy, too. I did lots. Be kind to yourself.

suburbs, I too like lots of info. I have a pro and con list as well and a long list of questions for my next surgery consult. My medical team is very patient and always provides me with multiple treatment options. Some days I get overwhelmed with all the info but am close to making a decision. The posts here have certainly helped. Thanks for your response, take care

Hi Ladies, I had BC in the left breast and they seen some small calcifications in the right side. They wanted to tested the right side but I ask her if she would remove them both and my surgeon oncologist asked me if I would be upset if they removed the right breast and there was nothing in it. I said no I wouldnt be upset. So I had a bilateral mastectomy with reconstruction and I'm very happy I made that session and no regrets. I wish you piece with making the right decision for you.