TRIPLE POSITIVE GROUP
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Since I began treatment, my clinic's infusion room has moved three times, and will soon move again. First time -- mold found in the clinic's walls. Moved to a new building, on the second floor. Pipes burst on the third floor, flooding the second floor. Now, it's at the regional hospital, but it will soon move to another part of the hospital (to where the breast care center used to be). It's just a bunch of recliners, though the new recliners are supposed to have a massage element to them. Best of all, the friendly staff provides heated blankets, snacks, drinks, and the like. It's homey. A friend used to visit me during infusions; we'd gossip about work and family stuff for a while, and then we'd go out to lunch afterwards. Now, I just go there for my Zoladex shot and port flushes. (Still clinging to my port; just paranoid, I guess.)
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Shelabela:
The one I go to has cubicles with a reclining chair and a few chairs for guests, but whoever takes me typically wanders off, which is fine because I'm too groggy and focus on tolerating the cold cap to want to have a conversation.
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The one I wanted to go was all open bay. I really liked the Oncologist but I knew I could not be in an open bay.
The treatment center I selected had several areas with 6 to 8 lazy boy type chairs. Each chair had it own set up, portable IV stands, cabinets ... . No TVs. And I remember someone got lunch from this forum.
There was a very heavy carb snack chart, lots of crushed ice and tons of coffee. Volunteers served.
I recently had PT on my hands. The final treatment was heated wax. I would be asked why I didn't want the chair lowered. I responded it reminded on a chemo chair and I wanted to stay upright.
Vicky
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My TCHP treatments were in a separate room because I did dignicap. I think that since they only offered dignicap to breast cancer patients, they didn't want all the other patients to see it. Less complaints that way, maybe? My center has some beds in rooms, but mostly chairs in cubicles with a little bench seat next to them for caregivers. Each cube or room has a TV. The cubes have headphones for TV audio. The cubes are relatively open, just closed enough that you're not looking at other patients while you're getting your chemo but people can easily see in from the aisle when they go by and you can partially see the folks in the cubes across from yours. No photos are allowed in the infusion center.
I met with my MO today. He said TCHP wasn't a waste. The surgical specimen did show cancer death. He is going to have the surgical tumor specimen and possibly the lymph nodes tested for receptors and add and/or subtract treatments based on those results. AIs will start after radiation finishes. He thinks my prognosis is good because Her2 positives are doing really well these days with all the different treatments available. He said he knew of no reason why I couldn't scuba dive while on treatment, not that I'm going any time soon but it's good to know for planning purposes, maybe my husband and I will do a winter trip someplace warm.
LaughingGull, my cancer was >90% ER+ with strong staining and either 89% or 60% PR+ with moderate staining, depending on which biopsy result you looked at. So yes, very hormone positive. I did not get any exercises from my BS after surgery; she just said I could do anything that didn't hurt. Her and the PS said I should have full range of motion right after surgery. I talked to the nurse a couple days after surgery and mentioned that my arm was too sore to lift all the way. She said to give it some time to heal before trying to regain range of motion. I see the BS's PA in two weeks, I think, so I will ask about PT then, but I do think there will be some in my future because even though I'm trying to get my arm up, it continues to hurt too much to extend it all the way up. I also asked to see a lymphadema specialist for some baseline measurements and advice on avoiding lymphadema but was told to wait a couple weeks. I'll ask my PS next week how long I need to wait for that.
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Hapa, I've seen this link regarding lympedema prevention elsewhere on BCO. Maybe it could help you. They advise to go slowly in the time after operation... http://www.stepup-speakout.org/riskreduction_for_lymphedema.htm
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I have noticed a mixin therapies and treatments depending on when the initial diagnosis occurred. Seems like those diagnosed in 2015/2016 received surgery first then chemo and some type of Target therapy, not always TCHP. In 2017 and 2018 there seemed to be a switch to TCHP then surgery, was there a switch in thought around this time. Does anyone know. I'm wondering if I have started the right progression. Thanks for any responses
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mactaz - when it comes to Taxotere versus Taxol and whether Perjeta is added to Herceptin for Her2+ patients there are several things that factor into the decision. Clinical or pathological staging and the timing of the use of Perjeta is linked, whether neoadjuvent versus adjuvent, and which regimen used are all connected. Taxol and Herceptin as a stand alone single agent regimen came about after the ATP study at Dana Farber determined it can be used successfully for Stage 1 patients, thereby lessening the possibility of more debilitating side effects without compromising performance. This study prompted use in oncology practices over the last few years, but you will see it used in some cases even longer ago than that. In Sept 2013 Perjeta was approved for neoadjuvent use only for early stage patients, combined with TCH and for tumors 2cm or larger, or smaller tumors with positive nodes. This drove the change from surgery first to chemo and targeted therapy first for patients who met that criteria or had elevated risk factors. I think that 2cm/node positive/high risk criteria is what most oncs are still using in deciding who should receive Perjeta, but there is more flexibility in the decision making and better cooperation by insurance companies. In January of 2018 Perjeta was approved for adjuvent use, so it can be continued after surgery if warranted, or added based on surgical pathology results.
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Thanks so much SpeciaK, that really helps explain. They haven’t formally staged my current DX but initially felt stage 1, final staging after my MRI. I received those results yesterday, left breast and nodes clear, right breast nodes clear but two additional areas in same area but higher up, small, and in milk ducts. BS thoughti it could be DCIS but perhaps also be fibrous, won’t know without another biopsy. Concern was they are small so didn’t know if they could get sufficient sample to test but I’m leaning towards trying anyway. BS was saying without verification that it was clear, MX would be best solution. I guess I’m just not ready to throw in towel and forgo lumpectomy. I will meet MO next week for follow up of 1st infusion and will get his thoughts. Also will and discuss further with BS, have to admit it really starts to pile on, I just want to stay clear headed so I make the right decision. Thanks again
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Hapa, BS suggested exercise from the Sloan Kettering cancer site since the pictures are so clear. I was measured for Lymphedema baseline before surgery and given a sheet of what to look for and procedures that shouldn’t happen on that arm. I had surgery before chemo, TCH (no Perjeda because smaller than 2cm). Since my ER is 100%, I wonder if I should inquire about Perjeda?My infusion center had cubicles with a comfy chair and a guest chair. Not so private but all the nurses are wonderful and I still go there for my Herceptin. I start radiation next week and welcome any advice.
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Hello to all and hoping you are having a nice Sunday! I have been reading with interest all of your posts but haven't posted lately. Radiation completed a few weeks ago with just minor burns. Still getting Herceptin and Perjeta every 3 weeks through my port. Started Arimidex a few weeks ago and have minor side effects but nothing too bad yet. Wrist pain seems to bother me the most. One bothersome thing that has started just a few days ago is an ache deep in my left breast, where the tumor was removed. I was awake most of last night worrying about it. I'll call my doctor on Tuesday when they are back in the office. I had a mammogram after chemo in June and it was fine but I'm still scared. I'm usually not negative-minded but I'm afraid... One of my daughters is very ill with a chronic disease and she just got home from 2 months of hospitalization last week. She is still not doing well and I kept having visions in my head last night of both of us dying from our illnesses and leaving my husband and other children to mourn both of our deaths. Very dramatic, am I right?! Sometimes in the darkness of night, sad thoughts seem to prevail but now the sun is shining and I'm hoping for more positive images in my head! Do any of you have experience with an aching breast on your affected side? Maybe it's nothing to worry about.
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JaBoo and Jstarling, thank you for the exercise links. I have an appt with my PS to have my drains pulled on Tuesday so I will ask her about starting exercises then.
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I am sorry both you and your daughter have had a rough road lately. It must be tough on you and your husband.
I believe the grief cycle of is often over look by the medical teams that care for us. https://psychcentral.com/lib/the-5-stages-of-loss-...
The loss of a body part be it a breast, a lump, a node or be it the loss of what we once thought certain (i.e. I will live a long life, I am healthy, cancer happens to someone else ...) is hard to get your ahead around. It was hard for me. So much happens so quickly when a woman is first diagnosed. I find this especially hard for a Triple Positive diagnosis because our treatments are so very long.
I can not answer your question if this is something to worry about. I do believe it would be helpful to talk to someone. Maybe your Medical Team can suggest a Counselor or Social Worker. I would caution you that my first Oncology Team tried to throw antidepressants at me like candy. There is a BIG difference in being sad and being depressed. I read in my oncologist's records that one of my conditions was "depression." I asked when that diagnosis was made and who on his team was qualified to make it. His retort that everyone with cancer gets depressed didn't fly with me. I had this removed from my records. I am OK being treated for depression if I have it. I am not OK with a mi diagnosis. Something like 80% of breast cancer women suffer PTSD. That is what I am treated for.
I hope some of this rambling helps.
Vicky
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Wonderful insight coachvicky.
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Good points, coachvicky. I made it through treatment without antidepressants and I was fine. But, then I went on an AI, which (of course) messed with my hormones. I have always had severe mood swings during episodes of hormonal change -- right before my period, during pregnancy and after. So, when my MO suggested antidepressants to help with the mood swings from Aromasin, I said "Yes." I don't consider myself to be clinically-depressed, but certainly welcome the fact that Celexa has evened out my moods.
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ElaineT ... That is great news that you got the Rx you needed. A substance induced condition such as an AI can cause requires the MD to fully understand what is going on in the body and mind. I worked with a Resident at my last Psycharist's appointment. She said "I got it. You take Ritalin because of the Arimidex and your breast cancer ... this was not you you entire life." She aslo said that she did not think she could take an Rx like Arimidex. For some reason I found that supportive.
Vicky
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Hello all,
I just had my first round of Taxol last Wednesday on August 31 and I am feeling some bone pain and I have a headache. No nausea or vomiting which is great. I am very happy to be on this Tolaney protocol for HER2+ for those with tumors less than 3cm’s but is there anything safe to take for this headache?
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Wow there are so many strong women in this group. Kudos to you all. I start my taxol treatment this Thursday and am very nervous. Hopefully it won't be too bad and I can continue for the other 11 weeks. I didn't have any lymph nodes affected but it was on its way there. thank you all for your support of everyone in this group. I keep telling myself that this time next year I will be done with this part of it and just continuing with the hormonal treatments. Trying to stay positive.
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thinking of you all, and routing for you during your treatments!0 -
Thanks, CoachVicky, for your response! I chickened out today and did not call my doctor about the pain in my affected breast. It does not hurt as badly today and I don't want to know what she has to say. I know that it is not a good idea for me to ignore it so I'm psyching myself up to call her tomorrow. I already have an echo scheduled for tomorrow to check and see how my heart is handling the Herceptin, so I feel the stress of my "what is going to go wrong next" mentality amping up. Gosh, if I could have two glasses of wine right now, I'd probably feel a lot better!
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Rosee—a lot of people tolerate Taxol pretty well. I didn’t have major issues. A few down days following the last maybe half of them and a tiny bit of neuropathy toward the end but really not too bad. The premeds do a nice job, and there are good suggestions on this site for dealing with any SEs that might pop up. The infusions themselves are pretty boring. Bring some reading material/entertainment. Most infusion centers have TVs but I decided I’d rather not do that (except when the World Cup was on!). The 12 weeks drag at times but you’ll get through it
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Thank you ingerp - I appreciate it. I have lots of things to do (my sister-in-law made me a chemo treatment bag with all kinds of neat things) and I can always play games and watch movies on my phone.
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Rosee I used to color...I found it relaxing. But I also actually used to work during infusions. I dont recommend that. I wasnt being kind to myself. I think I was trying to deny I was even in the chair. Hugs...
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tresjoli2 - thank you! my sister-in-law gave me some "adult" coloring books and colored pencils. The books are stained glass pictures, flowers, etc. so I may just have to take one of those along. I can't work while doing the infusion so I guess that will leave me plenty of time to concentrate on myself. :-)
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Welcome Rosee - this group is amazing and so supportive. The first infusion is the scariest because you don’t know what to expect. I found meditating was helpful to calm my nerves. Be kind to yourself before, during and after treatments to help your body heal. You can do this. We’re right there with you 😊0
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hapa - I also experienced tightness and limited range of motion after surgery. My BS and PS instructed me to gently massage under my arm and breast starting a week after surgery to reduce scar tissue and cording. At about a month after surgery, my BS showed me a more rigorous massage to start doing several times a day plus she had me see a PT for range of motion exercises. I followed instructions and did my exercises daily. Most of ROM returned but it was still really tight after a few months. I went to a PT and she found 4 cords under my arm. It took about 2 months of weekly appointments to work out the cords.
I developed mild lymphadema early this year because of shoulder surgery. My PT was able to manage it and now I only need to wear my sleeve when I travel. I get swollen when flying but nothing major.
I think the key is seeing a PT early to get evaluated and doing exercises consistently to keep your lymphatic system flowing properly.0 -
tld - so sorry to hear of the challenges your family is having. I will keep you and your daughter in my prayers. Your fears and sadness are understandable. I don’t think you are being negative at all. Stay in faith and expect a miracle for both of you.
I still get these weird pains in my new breast and where my port used to be. Sometimes they are bad enough that I think a call to my MO might be a good idea but they usual go away after a day or so. I get weird pains all over my body and try not to think the worst - most days I accomplish that but other days worry creeps in. I would not hesitate to contact my care manager if your pain does not subside or just to get peace of mind
Sending ((hugs))
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Coachvicky- your strength inspires me and serves as a reminder that we are in charge of our bodies and therefore our treatments. I applaud that you had depression removed from your records. I hate assumptions and think it’s important to be accurately assessed. I am grateful that my medical team always asks for consensus from me and my husband on every part of my health care.0
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den1661 - thank you! I do Tai Chi Wednesday evenings so I am going to practice the night before and the day of and of course days afterwards. It really helps to calm the nerves. My husband keeps telling me that I will have to slow down and take care of myself. Something really hard for us "moms"/women to do.
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Thank you, deni1616. It sounds like you have a great team.
I have some good news. Got my bone density results after starting Arimidex on 4 April 2017. I have had 2 Prolia injections. The report reads "definite improvement in the mid lumbar and the right femoral neck, and only a slight decrease in the left femoral neck. Overall this reading shows a trend of improvement."
Dancing on my eyelashes.
This post was posted on "Doing Well on AIs" also
Vicky0 -
silly question time. I am going to try and continue working for as long as I can once I start treatment. I work in a building with lots of people but we are all in cubicles. I sit at my desk for most of the day. There are people around me but not sitting right next to me - if that makes sense. How long after my first treatment, do I need to wear a mask to work? I figured on the elevator I would or if I am around people that are sick or large groups of people. I am nervous about catching bugs from other people and I can't work form home all of the time. I haven't really been able to find if your immune system gets weak right away or if it takes time (like a day or two after treatment), and does it build back up before the next week's treatment? I'm trying to decide if there are days that I shouldn't be working at all vs. days that I can come into the office. I imagine that the more treatments I have the weaker my immune system will get??? is that a correct statement? I figured someone in this group would be able to help me out. Thanks in advance.
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