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Stopping radiation before complete

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Monarch View Drop Down
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    Posted: Mar 15 2020 at 12:21pm
All,

As with many of you, radiation has not been my friend.  I have completed 4 weeks of 6 scheduled.  I have missed five days due to complications. 
 
I made the mistake of taking Xeloda, prior to radiation.  It produced an increased sensitivity to the radiation, along with my MCTD (mixed connective tissue disorder).  I burned from day one, when most do not even feel anything until week three or four.  I was getting 210 cGy dose a day.  

I negatively reacted to all the common treatments such as hydrocortisone, Benadryl cream, Aquaphor, lidocaine, Cerave.  I have only been able to use Euricin lotion, Aleo, and A&D, and it doesn't provide much in the way of relief to the burns. 

They switched me to the boost therapy last week to give the sternum area and supraclavicular area a break due to the rash and burns, but I was only able to do two days, before I began throwing up from the pain in the supraclavicular area. Apparently, the radiation continues to burn your tissue a week after receiving it. 

I have taken the last three days off due to a possible pericarditis and an infection in the supraclavicular area.  The thought of going back this week for 10 more sessions of burns on top of burns, is daunting, especially with the heart pain and palpitations.  My RO has been out of town, and his replacement didn't want to do anything.

Question....Have any of you stopped the therapy in Week Five, and remained cancer free?

Thank you in advance,

Monarch
DX IDC, Metastatic Stage III, 6/6/2019, Nodes pos, 5.6 x 3.3 x 3.5 left breast. Ki-67 90%. AC x 4, T x 12, Partial Mastectomy and Targeted Axillary Dissection, Thyroidectomy,
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Plume View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Plume Quote  Post ReplyReply Direct Link To This Post Posted: Apr 03 2020 at 9:35am
My sympathy, Monarch.  I get how difficult things are with you. 

I had burns too but, like you said, only towards the end when they increased the dose to treat the tumour bed.

What I found very helpful was 100% pure aloe vera gel.

I did have lung complications but I won't tell you about those because you have plenty enough on your plate.  Also, I have been asthmatic for decades and I somehow suspected that I might have nasty effects on my lungs from the radio.  But my problems probably would not apply to you so just keep your spirits up and expect the best for yourself.  Good Luck!
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Post Options Post Options   Thanks (0) Thanks(0)   Quote femmelyn Quote  Post ReplyReply Direct Link To This Post Posted: May 23 2020 at 12:26pm
Plume -- I don't want to scare others but I have also been asthmatic for decades with it well controlled for almost 20 years with Flovent. I'm really worried about what radiation will do -- I don't want to go back to the "before." And on top of that, it is my left breast. Meet with the RO on June 9 to discuss the plan as I finished dose-dense ACT on May 21.

dx 12-10-19 | age 55 | TNBC stage IB grade 3 | 1.2 cm 0/2 nodes | BRCA- | lumpectomy 1-6-20 | ACx4 started 2-5-20 finished 3-26-20 | Taxol x4 started 4-9-20 finished 5-21-20 | 20 rads finished 7-20-20
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Post Options Post Options   Thanks (0) Thanks(0)   Quote mary2025 Quote  Post ReplyReply Direct Link To This Post Posted: May 23 2020 at 2:35pm
Hi femmelyn, I am on the similar schedule. I finished A/CT on 5/1 and am meeting with RO to discuss radiation options on 6/2.  I am also checking with my medical oncologist to find out more about proton therapy. I do not have any other health issues or complications.  It will be helpful to compare notes about doctor’s recommendations and thoughts. Best luck to us all! 
dx 10-29-19 | TNBC stage IA grade 3 | 0.4cm 0/1 nodes | BRCA- | lumpectomy clear margins 11-14-19 | ACx4 started 12-18-2019, finished 1-31-2020 I Taxol x12 started 2-14-2020 finished 5-1-2020
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Post Options Post Options   Thanks (1) Thanks(1)   Quote Plume Quote  Post ReplyReply Direct Link To This Post Posted: May 24 2020 at 4:44pm
Originally posted by femmelyn femmelyn wrote:

Plume -- I don't want to scare others but I have also been asthmatic for decades with it well controlled for almost 20 years with Flovent. I'm really worried about what radiation will do -- I don't want to go back to the "before." And on top of that, it is my left breast. Meet with the RO on June 9 to discuss the plan as I finished dose-dense ACT on May 21.

 
Femmelyn, I will tell you my experience but I am not sure if others share similar experiences.  Mine was the left breast too.  I did read that both your heart and lungs could be impacted.

During the radio, I noticed that I was coughing incessantly and that my face often looked very red.  Whenever I asked about possible effects on my lungs, I was told that the rays did not go near my lungs.  BUT, I am slender and I don't have much flesh in the chest area.

The constant coughing went on for about 9 months after the end of radio.  I was treated repeatedly for chest infections, had my asthma inhaler changed and told by my generalist that I had developed Chronic Obstructive Pulmonary Disease.

I got to a low point but I tried to make light of everything.  Eventually, the chest specialist ordered a scan which shows several "holes" in both my lungs but more so on the left than on the right.  The scan report said they were emphysematous bubbles.  I had several sessions with a physio specialising in lung function and he said he thought the radio had indeed affected my lungs.

To this day, I am not sure whether the medics weren't just trying to be reassuring by saying the radio had nothing to do with my lung problems.  I am trying not to dwell too much on what is now over and done with.  I concentrate on daily exercise and health supplements, a nutritious diet and breathing exercises to keep my lungs working as well as possible.  I do have to double my doses of asthma drugs during periods of high pollen levels or sudden changes in temperature.

Good luck with the rest of your treatment. 


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Post Options Post Options   Thanks (0) Thanks(0)   Quote femmelyn Quote  Post ReplyReply Direct Link To This Post Posted: Jun 09 2020 at 12:06pm
Thank you Plume! I met with the radiation oncologist today and of course was told they will "block" off rays to the heart and lungs. I also have smaller breasts than a lot of people but the doctor made it sound like that would make it easier to target the radiation. I will certainly hold off if I start having similar symptoms and have my lungs checked out! 

I'm still retaining fluid and my heart rate is higher than normal (but not extremely high) so I want to have an EKG done before I start radiation to make sure my heart has not been damaged by the chemo. They tell me I will need 20 radiation sessions -- 16 to the whole breast and 4 blasts.
dx 12-10-19 | age 55 | TNBC stage IB grade 3 | 1.2 cm 0/2 nodes | BRCA- | lumpectomy 1-6-20 | ACx4 started 2-5-20 finished 3-26-20 | Taxol x4 started 4-9-20 finished 5-21-20 | 20 rads finished 7-20-20
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Post Options Post Options   Thanks (0) Thanks(0)   Quote femmelyn Quote  Post ReplyReply Direct Link To This Post Posted: Jun 09 2020 at 12:20pm
Originally posted by mary2025 mary2025 wrote:

Hi femmelyn, I am on the similar schedule. I finished A/CT on 5/1 and am meeting with RO to discuss radiation options on 6/2.  I am also checking with my medical oncologist to find out more about proton therapy. I do not have any other health issues or complications.  It will be helpful to compare notes about doctor’s recommendations and thoughts. Best luck to us all! 

Mary -- I saw in another post that you were not a candidate for proton radiation. I don't think any facility near me offers it so I didn't ask about it. I'm too tired to think about going to the nearest one about 4 hours away. So the treatment plan is for 20 sessions, which I'll probably start June 22 -- 16 whole breast and 4 blasts.
dx 12-10-19 | age 55 | TNBC stage IB grade 3 | 1.2 cm 0/2 nodes | BRCA- | lumpectomy 1-6-20 | ACx4 started 2-5-20 finished 3-26-20 | Taxol x4 started 4-9-20 finished 5-21-20 | 20 rads finished 7-20-20
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Post Options Post Options   Thanks (0) Thanks(0)   Quote femmelyn Quote  Post ReplyReply Direct Link To This Post Posted: Jun 09 2020 at 12:35pm
Monarch -- I hope you are feeling better regardless of what you decided about radiation!

dx 12-10-19 | age 55 | TNBC stage IB grade 3 | 1.2 cm 0/2 nodes | BRCA- | lumpectomy 1-6-20 | ACx4 started 2-5-20 finished 3-26-20 | Taxol x4 started 4-9-20 finished 5-21-20 | 20 rads finished 7-20-20
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Post Options Post Options   Thanks (0) Thanks(0)   Quote snugltz Quote  Post ReplyReply Direct Link To This Post Posted: Jun 12 2020 at 3:55pm
before radiation get an aloe plant. Not the gel stuff from the store but a plant. Cut open the leaves and rub it directly on your skin. I have the whitest skin imaginable and the doc said I would fry. But my husband got me the plant and I had 2 months of rads and not until the last week did I even get red. An elderly lady had cancer behind her ear and her doc didn't want to do radiation. She was 80. He thought shed burn to much. I gave her part of my aloe plant and she never did burn. I have also given some to others and it helped them also. Cant say it will do it for everyone but it has worked for several.
1 cm, 0/2 neg nodes, lumpectomy 6/16/10, cytoxin/taxotere 4x every three weeks, rad start 11/8 33X
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Plume Quote  Post ReplyReply Direct Link To This Post Posted: Jun 14 2020 at 4:21pm
The "gel stuff" is fine if it is from a reputable company and is 100% aloe vera barbedensis.  Not only good for radiation burns but any scalds or burns and some specialist Burns Units use them on their patients.

No reason why anybody should not at least try it.  As far as I know, it is well tolerated by even the most sensitive skinned.  I don't use a plant only because I don't know enough about the plants.  The barbedensis is the one to have for the best effect.
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