ER-, PR-, Her2+ Roll call
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@beekaycro24 I'm really so happy for you ๐ that you're finishing radiotherapy and especially that you're hardly having any side effects from Kadcyla. That's great! Here they don't let us go to public pools for six months after radiation, they said the chlorine can irritate the skin, which becomes very sensitive. And regarding the sun, they told me to avoid the hottest hours and to use SPF 50, the children's one. I donโt know if the sun there is weaker than here, but I find it funny they mention SPF 15 because here no one uses such a low factor. If I were you, Iโd still use a high SPF for the next year and a half. Better safe than sorry! I've also been to the dentist and already have my port removal scheduled for July. I finish Herceptin in October. And you, when is your last Kadcyla infusion?
As for my hair, I still have areas with less density where the scalp is visible, but it has grown a bit. My eyebrows are still very thin and I still need to draw them in with a pencil to give them some definition. Itโs been a very slow process. I do have quite a few eyelashes now, but theyโre short and even though theyโre black, from a distance it still looks like I donโt have any.
I hope you're all doing well! ๐ผ๐ป
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I finish Kadcyla on February 10th if nothing changes in my schedule. Apparently it's common to put off a treatment to travel or if your blood work is weird. My white blood cells, platelets and neutrophils were all low this week, as well as my liver enzyme was 1 over the normal range. My onc said it was probably due to the radiation treatments and should improve by my next treatment. I was so glad I was able to get my Kadcyla yesterday. I really thought they'd say no. I already have high SPF sunscreen that I use when I drive with my top off of my car. I also have UV shirts and a sunhat I wear outside. We haven't decided if we're going to the beach this year, or just travel around the USA and sight see. It just seems weird to not plan on swimming or sunning. I can't remember the last time I didn't swim over the summer.
So glad you're getting your port out soon! I love hearing of everyone ticking off their treatment boxes and am glad to do mine as they come. It's the little things, right?
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@beekaycro24 thank u re the tips to protect skin etc.
Show off your clean teeth and smile!
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@snm thanks for the idea of a foot spa while I'm there!! They've gotten so little attention over the last year.
@beekaycro24 yay, yay, and yay! So glad your chemo is being kind to you!! Will say a prayer for your bloodwork to level out. Chemo played with mine and I worried that Phesgo would, but so far everything has stayed within normal ranges since finishing TC. You have done amazing with radiation! I only had 16 and I just felt whooped halfway through!
@catarina_fm I'm anxious to hear about the port removal!! They wanted me to keep mine until I finished targeted therapy. So you are only on Herceptin? I'm getting Phesgo which is both H&P. I got my 2nd to last shot yesterday!!!! The nurse said that Perjeta causes hair loss and thinning. I still have my fingers crossed that mine will ramp up once I get my last Phesgo next month.
Thank you all for the tips and advice on sun and swimming! I had to buy reef safe sunscreen for the USVI trip. But I did buy the 50. I have 3 UV protective shirts and found these long flowy pants with UV protection to wear over my suit when I'm not in the water. I will probably leave the shirts on though. For my radiated area, my suit will pretty much cover it. Mine did not go far up the chest and I can def. see the "tan" line. I barely could see a spot on my back during radiation so I know that area was affected as well. We won't be in pools, only ocean. I still will take some of the patches they gave me that seals off the port area.
For those in or just finished radiation. Make sure to keep using lotions! I did pretty good for a couple of months but then got lazy. I have a good sized section that has become thickened. It started about 4 months post radiation. I'm doing lotion and massages now to hopefully break it up a bit.
Happy Friday! Enjoy your weekend everyone! Hugs and prayers!!
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@grammie2 I'm only taking Herceptin because I also had red chemotherapy (AC) and my heart's ejection fraction dropped by 10% after the 4 infusions. It's true that I recovered after ending it, but the doctor preferred to give me only H. Apparently, the difference in effectiveness between taking HP and just H for those who had a pCR is actually very small.
I'm really looking forward to getting the port removed, but I'm a bit scared because a lady told me it's more painful to take it out than to put it in. I HATED getting the port placed ๐ญ it was done by an intern who almost threw me off the stretcher with the force he had to use. It was very traumatic and I was covered in bruises. The breast and lymph node surgery was easier for me. But I'm very thin and my port is really prominent. I don't need it anymore, so we're going to take care of that. I just hope the scar won't be too visible, because mine was placed very high up, almost near my neck.
So glad you're almost done with Phesgo! ๐Your sun protection plan sounds perfect! You can still enjoy yourself, just without taking risks. By the way, where do you buy those UV protection t-shirts? I'm going to Croatia and Montenegro in August, and Iโll be doing some hiking, so I think Iโll buy a couple of those shirts to make sure I donโt get sunburnt.
Have a nice weekend everyone!
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@catarina_fm G4Free was the brand I bought. I read lots of reviews and everyone seemed pleased with the sun protection. Ordered from Amazon. Hubby has some Eddie Bauer brand ones as well. What an exciting trip for you!!
And your port placement sounds horrible! For mine I was given sedating drugs and don't remember any of it. But I have heard they take it out in the drs office and not the hospital like when it was placed. I don't want to be aware of it at all when they do it! And that makes sense about not getting Perjeta. I think because I didn't have the horrible D that usually comes with Perjeta and tolerated it well is why I get both. I do think Perjeta is to blame for a lot of the edema in my legs though.
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@grammie2 thank you! I see that I can buy the t-shirts on Amazon here and Iโm going to order a few. They always come in handy! Yeah, I also wanted to be sedated but didnโt have that luck. Letโs see how the removal goes, Iโll tell you afterwards. Youโll see the swelling will get better once you finish the radiotherapy, and itโs almost done! ๐
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My removal was done at the local hospital, different organization, local anesthesia only. I had done the last few Herceptin infusions there. Doctor told me he does it quite frequently. No trauma at all.
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Luv hearing about everyone's trip and vacation! So well deserved. Croatia and Montenegro sounds Aaaamazing! Never been! I've never been to US Virgin Islands either but I'm sure it will be awesome! I'm planning on visiting Banff National Park, Calgary Canada in June for hiking but I need to make it through my MO follow up this May without issues. Not sure if I'm just going crazy with anxiety but off/on I've been feeling back discomfort..not bad but just noticeable..and today I noticed soreness when I palpated by breast bone on the left ..ugh ! I did do yoga this morning along with a few yoga pushups which may be the reason for all the soreness.. but ugh!
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@mcbaker Thank you, that makes me feel less afraid. hopefully the port removal goes smoothly. There's still over a month to go.
@snm I already have the Virgin Islands on my list, and oh my God, I just looked up photos of Banff and now I want to go there too. WOW, what landscapes! I hope you all enjoy your holidays a lot. we truly deserve it! ๐ฅฐ
I also get a bit paranoid when I feel something strange, but we really have to try to distract ourselves. The soreness is definitely from the push-ups, and unfortunately, back pain is common. Stay strong! ๐ช1 -
So I love all of the vacation excitement! With military boys, I've got to visit and see way more than I've ever dreamed! And we are always looking for new and exciting places to visit. My oldest and his better half have made a goal to visit an international destination every year. I told them about the talk here of Croatia and they are already researching!
I've traveled through Canada on the Road to Alaska. We entered at the port in Montana and exited in Tok AK. We went during February but it was such a beautiful trip and no horrible weather delays! Northern Canada knows how to handle cold weather and snow! The Yukon was so beautiful!
I don't care if it's a trip to the next state or next county from where you reside. Make plans for getaways!! Anything to distract us from what our normal life involves!!
@snm hugs to you!! I can't tell you how many times since DX and during treatment I've had weird things causing pain or discomfort that made me worry! We all need to be mindful about new and alarming things, just remember that 99.9% will be nothing alarming! I've made a point to date something new or different and forget about it. If it lingers more than a couple weeks, I then alert a medical team. So far that has only been once and turned out to be an infection of some kind. Antibiotics cleared it and hasn't returned. Don't dismiss, but also don't assume the worse! Hugs hugs and hugs. I'm still figuring out how my new normal will be too!!
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Thank u for the reassurance! Yes those darn pushups got me good ๐. I'm also writing down dates as symptoms appear and try to distract myself..but sometimes the paranoia sets in!
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I did it! I rang the HELL outta that bell!!!!!! I can't upload the video here but you can check it out on either my Instagram (beekaycro) or Facebook (Berta Crowe). SO relieved that is done. Now, I only have a month of physical therapy left and ten months of Kadcyla. WOOOOOHOOOOO!!!
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Congratulations @beekaycro24! โค๏ธ
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I had my port installed on yesterday and am a bit confused. I didn't realize that it's covered with skin and to do an infusion, they need puncture the port each time. Based on the photos I've seen, I thought it would be more like a PICC line under the collar bone. I read that it's threaded to an artery near the heart but did not read that it uses the jugular vein to get there. Ugh. So how do you guys deal with having your skin punctured during every infusion session? They said this would be much better than having IV's and blood draws but it doesn't seem like it.
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They should give you an anesthetic cream, much like what tattoo artists use.
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Your onc should give you a prescription for Lidocaine, a numbing cream. If my infusion appointment is at 9:00, I start applying the cream around 7:30. Then, around 8:00 I smother the cream on (really glob it up), then cover that in Saran Wrap (the Press-n-Seal works best). I'm good and numb by my appointment and don't even feel the prick. My treatment center also has a spray on numbing cream that I've seen people use, however, I've never needed it. It is much easier for blood draws and meds.
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The spray is fantastic though in all honesty, you still feel the needle go in. Its way easier than an IV tho. I used the numbing cream as well. I plug my nose when they flush it because I taste rubbing alcohol when they flush it with saline.
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Hi girls! Do you use anything to numb the area before accessing the port? Here, nothing is used. When the nurses go to access the port, they just tell me to take a deep breath and itโs just a tiny prick that lasts a millisecond. Honestly, it doesnโt bother me at all! I donโt even feel it when they remove the needle. I donโt know if Iโm just lucky or if itโs usually painful for some people. And if you do use something that helps with the pain, thatโs great!
There were some procedures that were painful for me because they were done without anesthesia, like the IV in the hand for surgery and the placement of the wires in the breast and armpit, also for surgery. If I had remembered that numbing cream, I think I would have slathered it on ๐ I donโt know if it interferes with anything or not, but it sounds like a great idea ๐
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Congratulations @beekaycro24 ! You showed that bell who is boss!
Update - I saw my MO and had an all clear follow-up exam. I did get a CT of thoracic spine as I was having intermittent pains and good news No Mets! Just me getting old! ๐
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Oh I also asked my MO about the DNA blood/tumor tests that are out there to look for recurrence. She said for early stage breast cancer it's utility is questionable. She didn't recommend it but if I wanted it she would pursue it. I declined. I don't want the anxiety.
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@snm, interesting because my first go at the bloodwork is next week (6 months post all treatments). They told me not to get excited if the results fluctuate over time.
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@snm that is wonderful news about you getting old hahaha! So glad the scan was clear!!!
@beekaycro24 Yay!!!!! So happy for you!!
@chocomousse I will take that port stick any day over an IV. I have horrible veins. They did give me numbing cream to put on an hour before but I rarely used it and just let them do the freezing spray. Just take in a deep breath when they are ready to access the port and it is virtually painless. And same about holding your breath during the flush because I can taste it when they do it. My center has soft peppermint balls they offer as well to suck on during the flush.
On the marker blood test, I wasn't asked, they just did it. But only 4 months post chemo. I'm confused as to why they didn't do this in the very beginning when I knew I had cancer to have something to compare to. I have also read they are not very reliable in detecting cancer.
I had a wonderful vacation and managed to only sunburn the tops of my feet LOL!!! I looked like an old old lady covered from head to ankles on the beach! The sun pants I found were amazing! They were cool and I could tie them up to wade in the water for a bit. The best news of the trip was my son asked his girlfriend to marry him while we were there!!!! It was so sweet and I am so excited for them. I love her like crazy and she is so good to my boy!! Blessed beyond measure!!!
Next Thursday is my last Phesgo!!!! I can't wait for this crud to get out of my body and to get rid of this edema. I have it everywhere!! I can even feel it in my butt when I walk LOL. But thank God it is not in my feet. Ankles will swell at the end of the day but go down during the night.
Hope everyone is having a good week!!! Hugs!
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@snm You may need to ask specifically for tumor marker antigen tests. Not to be confused with genetic marker tests. I have been given these tumor marker antigen blood tests, specifically the CA27-29 and CEA, every year since 2015. A significant increase in my CEA levels is what alerted my doctors that something was wrong and to schedule a followup PET scan which diagnosed my breast cancer metastasis.
Here's a breakdown:
Cancer antigen 27-29 (CA 27-29)
Cancer type: Breast cancer
Uses: Monitor ongoing treatment
Carcinoembryonic antigen (CEA)
Cancer type: Mainly colorectal cancer, but sometimes other cancers, including stomach, lung, thyroid and ovary
Uses: Monitor ongoing treatment and look for recurrence
Source: https://www.cancercenter.com/diagnosing-cancer/diagnostic-procedures/tumor-markers
Also, I start my infusions next week. My port installation area is still sore. Ugh.
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My last BC recurrence was in 2013. I have bloodwork every year that includes CA27-29. My oncologist did tell me that the accuracy might vary, but what he was looking is a trend.
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Thank u for the info re CEA and Ca27-29. I can see how trending it could be helpful. Not sure why my doc didn't recommend.. maybe just going off of symptoms? Maybe outcomes don't change since I'm monitored clinically every 6 months? I'll ask about it at next visit or maybe next blood draw.
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@chocomousse how are you doing? Have you started treatment yet?
How's everyone else doing?
I have to admit I am getting very excited about my last Phesgo Thursday. I didn't get overly excited at the end of chemo or radiation because I knew I still had things to do. But this seems different, and admittedly a little scary too. Mammo is scheduled for May 28th and already anxious about it. My boob hurts! Still swelling and of course the lovely seroma is still there. But mainly anxious about the results :(
Question on port removal. Who's done it? I've read it is taken out with just numbing in the drs office??!! That blows my mind! And I don't want to be alert for this! It freaks me out a bit! I don't have anything scheduled for this but it was discussed in one of my later MO appts. That we would wait until Phesgo was completed.
And one more question. Is anyone taking anything for their digestive system post treatment? I just feel like my stomach has never recovered from chemo. Maybe it will once I'm done with Phesgo?? My BM's are still weird without going into a lot of unwanted details LOL. I get bloated easily too. I started eating yogurt with probiotics hoping that might help??
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@grammie2 Although I kept the 1st half of the appointment which was to further discuss my treatment details and get another blood test, I postponed the infusion until next week. I'm taking a few herbs and nutraceuticals which are helping my liver and kidney function but my alkaline phosphatase levels have doubled since my last blood test about 4 weeks ago which isn't good. May be an indicator of bone mets. Ugh.
Having my port removed scares me too.
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Sorry you had to delay treatment @chocomousse ! I'm still learning about all of these blood tests! My ALP's have fluctuated before, during and after treatment, but are still within normal range so far. I worry about chemo damage and trying to watch all of the blood test results. Hopefully you will be able to start soon!!
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