January 2021 Radiation Club
Comments
-
Hey Morningstar! I'm glad they could help you for making simulation easier! I thought the simulation was relatively quick and easy and hope you find that true as well! I was 37 on my first diagnosis and now have a 2nd primary (not a recurrence) and didn't do radiation the first time. I'm certainly thankful it's an option this time and like you, after this will begin hormone regimen. Also grateful for that option!
My RO decided after my simulation to have me get my port removed! So, doing that next Friday and then a minor tweak to the simulation and I"ll be getting started. HATE the delay but, gotta roll with the punches!!
TGIF - hope everyone is doing well!0 -
Hi Mindi! Thanks for your note. I saw it before I went in this morning and it helped me chill so thank you. The simulation wasn't too bad at all. Even with the massage yesterday I was pretty tight and having my arms overhead for 25ish minutes was not fun but I got through it. They gave me the tattoos but had fluorescent ink so they said they will only be visible to me if I go to a rave lol. I thought I would have started radiation by last week so I too am frustrated by the delay. I had it in my mind I'd be done by end of February but at 6.5 weeks I'm looking at mid-March probably. My birthday is end of April though so good present to be done with treatment before then. I got my port out with the mastectomy and it's so great not to have it in anymore. Makes me feel less like Frankenstein. I did have to get a blood draw in my arm the other day though and that made me miss the port lolol who would have thought.
My nurse recommended I get calendula cream, does anyone have a brand recommendation for that? Also is anyone else doing the deep breath hold where you breathe through the tube and press a button to activate the radiation? I am bad at breathing in my regular life so I did not enjoy them plugging my nose and making me do that. Any tips or meditation recommendations would be great!
Thank you everyone for sharing your stories/info!
0 -
Happy Friday! I hope you all are doing well! I had my 1st boost treatment today and I only have 4 more to go next week and then I'm done! This past week was rough, I'm not going to lie, but from it I have some advice to pass along. I have a MO appointment next week and I had to get bloodwork on Tuesday...a CBC and a CMP. The CBC came back showing very low WBC and very high RBC, hemoglobin and hematocrit. Bloodwork I had mid-Decemeber came back fine, so I didn't know what could have happened. My MO called after seeing the results and asked if I was drinking enough because those numbers were showing severe dehydration. He suggested I guzzle water as much as I can and get it retested on Friday. I did and I'm happy to say my numbers are now on the high end of the normal range. He said radiation can cause dehydration. I always thought I drank enough, and maybe I used to before this, but I guess when you have radiation you need to drink above and beyond that amount. So to the ladies that haven't started radiation yet, my 2 pieces of advice are lotion/cream/ointment proactively and drink TONS of water!!
Morningstar - I've not heard of the breath hold tube/button...that sounds a bit complicated for the patient. I had to do the breath hold, but the techs must have pushed the button. I did struggle with anxiety over it my first week and some ladies from the Decemeber group helped me a lot with their suggestions. I've used Remedy Phytoplex and Aquaphor and had decent results from that. I'm red, but never itchy and my skin didn't break open anywhere. It kind of just feels like a slight sunburn.
Hope everyone enjoys the weekend!
0 -
Morning - glad you made it through! LOL on going to a rave! Ha! Not this girl. Mine are visible but basically a small blue ish freckle looking thing. Not a big deal all in comparison to the other changes to my body!! ;/ I’ve not heard of the breathing thing! Weird!
I’m frustrated over my delay too (I’ll be 7 wks out from my last chemo by the time I start) and seems you and I will be very close in timing! I will hope to begin by Feb 1 and with 33 sessions it’ll be mid March for me too. I also have a bday in April - the 25th...when is yours? I absolutely plan to celebrate!!!
Mama you are so close!!! I’m happy for you!! Thank you for the tips. Water is critical to everything it seems! I’m glad your labs turned out great! I will ramp up the water intake for sure!!
Hope everyone else is doing well! I’m glad it’s a 3 day weekend! Stay well and enjoy the weekend everyone!
Mindi ~
0 -
@Mama thank you for saying that about water. I am really bad about drinking water. I did well in chemo because I was told if I didn't drink a lot of water I'd be sick, but ever since then I've fallen off.
@Mindi mine is April 24! So funny, similar diagnoses and birthdays lol. I got diagnosed the month after my birthday in 2020 (also the day before my daughter's birthday because 2020 was an entity). So it will be great to be done before that anniversary and move on. I finished chemo Oct. 23 and then had surgery Dec. 3 so it's been a while for me too. They've reiterated to me that I'm currently NED so the radiation is to sterilize and prevent recurrence so I'm trying to keep that in mind.
I also loved everyone at the radiation center. Maybe the kindest people I've met so far and everyone throughout my treatment has been amazing. I'm a very anxious person normally and they told me straight away to relax and leave it all to them. Really comforting.
Anyway, the weird breathing thing I have to do is called ABC. They plug my nose, give me a breathing tube, I press a button and watch my breathing on a screen and when I hit a certain threshold the tube creates a suction so I can't take in any more air and I hold for 30-40 seconds (40 was hard). The radiation beam goes during that time. I have to do that 4-6 times per session and that's it. They said if I need to breathe I just release the button or spit out the tube but since I control when it starts it was ok.
Have a good weekend all!
0 -
Does anyone know if you can use a pool during radiation treatments?
0 -
Good morning!!
@morning - we have a lot in common- I was diagnosed on my husbands 55th birthday!
July apparently is not my month! I had my 1st dx in July 2003. Geesh!@Iam - I'm not sure about that. But it's a good question!
I'm excited to get my port out Friday and get radiation going next week I hope and pray!!
Take care out there!
0 -
iamloved - I would probably say no on the pool. Your skin will need to stay clean and moisturized during treatment and chlorine drys your skin out. Of course, ask your RO, but the way my skin felt earlier on and especially feels right now I wouldn't want to have any pool water chemicals touching it
0 -
mindi — I am 8 weeks out from taxotere and my hair is just starting to come back, but it’s still super patchy. On the other hand, my eyebrows just fell out and I’m pretty sure my eyelashes are trying to give up.
0 -
@melbo!!! What?!!? After 8 wks you're losing your lashes and eyebrows?!! How cruel! I am so sorry!! Is that common?! I have thanked God so many times when I apply mascara that I still have brows and lashes. OMGOsh! However, I am so thankful to hear that your hair is growing in - I feel like 8 wks is a long time and yet, I'm now encouraged. I know permanent hair loss is rare, but as my surgeon told me - hard to talk odds with someone like me HAHA! I was on Herceptin in 2003 as a clinical trial and so thankful I had access to that! I think it's a game changer! So, not to be too nosy, but wondered since you had lumpectomy, why reconstruction? Is that common? I don't know much about lumpectomy. Have you done your simulation? I've had mine done. Hope to get this going by next week!! The waiting...
0 -
from what I’ve read it’s fairly common for eyebrows and eyelashes to fall out weeks after finishing chemo. The good news is they should regrow fairly quickly.
As for reconstruction, my breast center does reconstruction as a default if they can. As my plastic surgeon explained it, if they had just taken the cancerous lump with good margins it would have most likely left a crater in my chest/breast tissue. Therefore they like to do reconstruction with lumpectomy so my breast would be shaped normally. Then if they only did lumpectomy and reconstruction on one side, I would be lopsided, so they do a reduction and reshaping of the other side to try to make everything match again.
I haven’t started simulation yet. I have one wound from surgery that is being really slow to heal. I just saw the plastic surgeon today and he wants me to wait another week before I start scheduling things.
0 -
Mindig66... I finished the end of October and SLOWLY my hair started coming back in December. Now this month it is really taking off. Yea!! So it took 2 to 2 1/2 months. The top of my head is slower then the back and sides but I read that is typical. I hope one more month and I can rock a extreme pixie!!! I am starting to hate the wig and the caps! Want to just be me again.
Melbo...I lost my eyebrows and lashes right around Christmas so I was almost weeks out. But they are coming back fast. In fact I need to go and get my brows waxed within the next week so yea for that. Lashes are a bit slower but the are coming back too. I wore false ones for about 3 weeks.
0 -
mindi... I have the HER2 type of cancer like you had, I did 6 rounds of TCHP chemo before surgery, usually people who do this have a complete response and all of the tumor is gone before surgery. I did not have a complete response to the chemo, and there was a total of 1.1 cm left, which they did remove with the mastectomy. Because of my age, and the fact my HER2 cancer is extra stubborn apparently, lol, is why they are recommending I do the radiation, in hopes that if there are any stray cancer cells left, they get zapped for good!. I hope this helped to explain my strange situation!
I did my mapping today. It was kind of a long day, I met with my radiation oncologist, and they began the mapping...I had to go to my plastic surgeon and have 150cc taken out of my expander on the non cancerous side, then had to return to the ro to finish mapping. Long day, but so grateful they were able to get everything done while I was there...it’s about a 2 hour drive for me. I am blessed and will be staying with my cousin and her family so I don’t have to make the drive daily. I am planning on coming home probably wednesdays, as long as the weather is good. I get to start next Wednesday! I’m ready to get this show on the road!!!Also, I should note, I have decided to do the traditional 5 weeks, because my ro could not tell me anything concrete about the 3 week trial...except that I am not a candidate for it. He did say the results are looking to be the same, but could not say what effect it would have, if any, to the reconstruction process. So, I’m doing 5 weeks, because it’s tried and true I guess.
How is everyone doing?? They said mostly, I would be a little tired...maybe a nap, and go to bed early tired, but nothing so bad I can’t do daily things. I did get a prescription steroid cream also, they said it helps the skin once we start radiation... I will also start kadcyla infusions every 3 weeks(immunotherapy for HER2+ plus a little dab of chemo) hopefully this combo doesn’t completely kick my butt!
0 -
Good morning to you all!!
@Melbo thank you for all that good information! I am awed at how much I still don't know. Not that I desire to be an expert but just hadn't thought about needing reconstruction after lumpectomy - since I had 2 mastectomy - but certainly makes sense. I hope your wound heals up so you can move on and be one step closer!!
@Iamloved - Thank you for the encouragement on the timing of hair regrowth. Guess 8-10 wks must be more the norm. I'm like you, tired of wigs and tired of ball caps and plan to burn them all when this is done!
I am also looking forward to an extreme pixie! My wig is actually one and I really like the look! I am bummed to hear you both lost lashes after 8 wks!! UGH! So, is it possible to wear fake lashes without lashes for support @Iam?? Sounds like you did. I know hair and lashes are not that big of a deal but gosh!
@mtspace- Thanks for the clarification! There's just not one right way and glad they tailor things to each of us individually using what they know is effective as the guide!! I'm glad that you can do the radiation to add another layer of fight against the stubbornness! I am all about using every weapon available to annihilate it!! I didn't get radiation in 2003 and the chemo and Herceptin (and lots of prayers) seems to have been enough to kill it! So, the radiation this time gives me an additional layer of encouragement. When I met with my surgeon last week to confirm what the RO planned (33 radiation treatments) he agreed that going with the tried and true was good. So 25 for you?
Hope the rest of you check in and update soon! I'll be getting my port out in the morning! Mapping tweaks done Monday and I am praying that I get the show on the road by the end of next week! I am 6 wks out from my last chemo today!!
Take care friends!
Mindi
0 -
Hello!
I am joining all of you this month in Radiation. I had my simulation on Monday, and start Radiation on the 26. I have x-rays on the 25th. I will have 21 treatments.
I am a little bit anxious.. but hoping that all will be easy. At least it seems like it should be easy...
Here's hoping!
Diana
0 -
mercsailor... I am starting Tuesday the 26th also and doing 25 treatments. 21 regular and 4 boots to the area where the tumor bed was. Prayers and best of luck to you. We will have to compare notes!
Mtspacekace...what is mapping? I had my simulation today and was out in 1 hour.
0 -
Mapping is the same as simulation, I guess my place calls it mapping... I will have 25 treatments, my oncologist said that we could look at doing boosts later, depending on how I handle the first treatments...
I had an ekg today, because I will be doing kadcyla at the same time as radiation. But...she was not able to get all the images because of my tissue expanders. This kind of worries me, I wonder if there is an alternative test that can be done.
0 -
Welcome Diana!! I'm glad we have a group on the journey for encouragement and info! The road with people is easier somehow. Everyone says radiation is easy! Let's hope! We need a little easy right!?
Mtspace- what's kadcyla? I hate when things don't go smoothly! I'm getting my port out today so they can tweak the mapping/simulation Monday bc they thought radiation would be more effective with it out since it's on the same side as the radiation will be! Good grief!! Also, on a lighter note...what kind of dog(s)? We have a rescue dog named Sally. She's got Addison's disease but is well managed. We have a golden who just turned one and her name is Charlie. Love them! We live on a prairie of sorts with horses and cattle and it's our little quiet slice of heaven.
Going to get the port out in a couple hours! Looking forward to that but crazy they can do that in the office! ;0
Happy Friday!
MIndi
0 -
mindi...lots of good thoughts as you get your port out! I am so glad I get to keep mine, I have horrible veins and having 14 treatments without it would be absolute misery for me. Kadcyla is herceptin plus a tiny little bit of chemo, it's used when you do not have a complete response to neoadjuvant chemo, for HER2 +....
I have 2 toy Australian shepherds... Fenwick and Pflueger. They are named after fishing tackle, as we do a lot of fishing...
0 -
The eyelashes and brows thing happened to me too. About 6 weeks after chemo ended. But once that last one fell out, I had full sprouts of everything within 2 DAYS. Lashes, brows, and hair are back in full now (my last Taxol was Oct. 23). My docs were like wow you're really hairy. Me: I'm Italian! Thank you to my Roman genes!
Cute pups!
0 -
I'm in awe of each of you ladies for all you've endured and you still have such a positive attitude.
When I arrived for the first treatment I was assigned a male therapist. I did request a female radiation therapist which was honored although they weren't happy about it because it affected their scheduling. My RO was not in this week so the RO I talked to advised I should have requested a female tech at the initial RO meeting. He's right and I completely understand. I did tell him I didn't really have a consultation with my RO prior to treatment and she wouldn't take questions at the simulation appointment. I'm still hoping at some point the RO will have time to explain why she chose the treatment plan, effectiveness and mitigation of any side effects should I have them.
I've completed the second of my five treatments and it's been a breeze. I'm using Cetaphil lotion on the area several times per day and so far, I feel fine.
Good luck to each of you!
0 -
I am new on here. I started radiation on January 18 and I do five days a week. I will do 21 treatments with the last 5 being boosters. I have noticed that I get a throbbing pain in the breast that has the radiation. I look forward learning from you all.
0 -
Dear Jules03,
Welcome to the BCO community. We are sorry for your diagnosis and treatment and we are so glad that you reached out to join our members. We hope that you will find support and helpful information here from those who truly know what this is like for you. While you are waiting for some others to respond to your post here is a link to information about Radiation Side Effects and Management.Please let us know how we can be a help to you as you navigate your way around the boards.
The Mods
0 -
Happy Monday!
Mtspace - cute puppers! I agree, the port is the best for infusions but now that I'm done, so happy to have it out, The procedure went fine - probably the most I'd wanna do in a doctors office! It was a bit more involved than I realized. But, ti's out, all good! Had my remap/simulation today and hope to get this show on the road by the latter part of this week!!
@Harley, glad to hear from you! It would be hard to have a male I think too! I hope your RO gives you the clarification you are looking for. I know this is all familiar and standard to them, but not to us! So glad you're doing well!
@Jules, welcome! I don't know a thing about the throbbing, but agree with the moderators - just look at that link and I bet you can get some help! Also, don't hesitate to call your RO! They would want you to reach out I am sure! Let us know what you find out. When did you finish chemo?
Hope everyone is doing fine today!
Mindi
0 -
I just found out I'm starting tomorrow! Very relieved as I was having anxiety this weekend that they've delayed me too much. I am done with active cancer treatment on March 15!!!
0 -
Morning - that’s so great!! I know you’re ready!! Me too! I sure hope I get to start this week too! Also, have you started Femara yet? If so, how’s it going?!
0 -
Morning...I am starting today too! Nervous as I have to hold my breath during the treatments. Prayers that things go well for both of us!! I have to pick up my steriod cream at the pharmacy today. I need to pick up some over the counter creams too. Hoping I can find some calendula cream at Natural Grocers.
0 -
I am so glad I found this group. I started radiation on January 18, 2021. I will do 21 treatments with the last 5 are boosters.
0 -
@iamloved yeah I really dislike the breathing thing. I cannot stand that they plug my nose it gives me so much anxiety. They said today and tomorrow I plug my nose the longest and then after that it will go much faster. I was happy that the actual radiation machine wasn't as uncomfortable as the one I was on for my simulation. Either that or my range of motion got better in the last week. It was also freaky having to walk into a room with all the scary radiation signs and the thick door but I just kept telling myself that I have to do this so better to be still and do it right the first time. I'm hoping by the end of the week it will be shorter and go smoothly. I was pleasantly surprised that the machine itself is so open, I was anxious it would be like an MRI which I dislike because of claustrophobia. Hope it went well for you too!
@Jules hope it's going well for you!
0
