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Debris

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Reply with quote  #1 
Hi!

Quick recap: after being disgnosed w/DCIS in 2008, having lumpectomy & mammosite radiation, I was on the AIs (tried them all, due to SEs).  In June 2010 I found a lump in my neck which pathology showed was now TNBC (no 2nd primary tumor found...).  Large number of nodes in chest, arms and neck were affected - too many for surgery or radiation.

I've been on Taxol+Avastin every two weeks since then. Recent scans (early January) showed no evidence of disease anywhere except in neck (at site of original lump excised in 06/2010.)  Oncologist has stopped the Taxol (due to intensifying neuropathy), but is keeping me on Avastin (every 3 weeks) for maintenance (FDA & insurance willing...).  And, now I'm going to have 30 X radiation (every day for 6 weeks) to the neck and clavical (??) area, starting this coming Monday.

So, after this long story, what I really want to know is, what should I do to minimize any side effects?  Are there any specific precautions due to the location of the radiation? Is fatigue an issue regardless of where / how much radiation?  (I never stopped working through chemo, other than taking "chemo day" off - mainly due to the long infusion time, and the effect of the benedryl.)  I'm anticipating having the radiation each late afternoon, so that I can go to the office in the morning, and go home after radiation.  Does this sound feasible?

Any and all suggestions welcomed!

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“The reasonable man adapts himself to the world; the unreasonable one persists in trying to adapt the world to himself. Therefore all progress depends on the unreasonable man.”
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delphinus

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Reply with quote  #2 
Dear (((((Deborah))))),

Just wanted to stop in to give you a hug. I wish I knew more about the radiation questions you have but I'm sure others and Constantine will have some suggestions. I do have some radiotherapy scheduled for next week (brain GKS--hope I am well enough to get it done! still recovering from flu) I know from corresponding with Constantine that within the Edge-CAM regimen, there are multiple components that are both powerful radiosensitizers and radioprotectives, including curcumin, DHA, EGCG, melatonin, parthenolide, selenium and the dietary component flaxseed, most with at least  in vivo evidence or higher offering an extraordinary level of radioprotection. There are several other CAM agents Constantine has told me about that could be added to this list so hopefully he will get a chance to stop by and round out my response.

The only radiation I have had was in 2005 following mastectomy and axillary dissection. They do warn of fatigue and I believe it is cumulative, but I didn't have too many problems with it. People's experiences can vary greatly though so I always like to brace for the worst and hope for the best! I know there are some creams and such that are helpful--Gina has mentioned on other threads but I can't remember the names. I'm sure she will see this and have lots of great advice.

I am so glad that you will be able to stay on the Avastin. Has your doctor talked about adding something to it instead of the Taxol? It sounds like you need a break because of the neuropathy but there are lots of other chemos to substitute that wouldn't contribute to more neuropathy. I only bring this up because back in 2008-2009 I was on the Athena trial receiving Avastin and Abraxane. I stopped the Abraxane after 10 months (I had had a very good response in my lungs and some remission of a single liver met) and remained on the Avastin for another 3 months for "maintenance". Unfortunately my Onc at the time was not on the ball and waited 3 months to scan me. It was discovered that just being on Avastin without a chemo allowed multiple liver mets to develop. Now everyone's cancer is different and perhaps mine is/was quite "aggressive", but I just want to suggest that you do not go very long between scans. I wish I had been able to stay on the Avastin and add a different chemo but because it was a clinical trial I was kicked off for progression and have never been able to access Avastin again because I am in canada.

So hope I am not giving you information overload but just felt I should say something so you can check in with your Oncologist about plans after radiation. (I always like to have a plan but I also appreciate some people prefer to deal with things as they come up--so my intention is not to impose my personal style of hounding my doctors with questions until I am satisfied with the answer and plan! )

I'm sure the radiation will go just fine but I hope you are able to take some rest days off work if you need too. Go easy on yourself! I am sending you lots of love and I'm sure others will be along with great advice and well wishes!

xoxox
love
janet



Debris

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Reply with quote  #3 
Thank you Janet, for your kind response. I prefer knowing about situations in advance if possible, too, and being armed with questions. So I do appreciate your insight. I was especially interested in your comments about the scans while on Avastin. The radiologist sort-of suggested that I should stop the Avastin for the duration. But that makes me very nervous, having just stopped the Taxol, too. (Oncologist said he was thinking of keeping me on Avastin only, until a change was indicated.).

Armed with your reply, I will know more to ask.

Hope you are soon able to throw off the last of the flu. It's really miserable, isn't it!

Love,
Deborah.

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“The reasonable man adapts himself to the world; the unreasonable one persists in trying to adapt the world to himself. Therefore all progress depends on the unreasonable man.”
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delphinus

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Reply with quote  #4 
No problem Deborah, my pleasure. Good you'll keep asking questions. Yes definitely check with your Medical Oncologist what he feels you should do about the Avastin while doing radiation. I have no official medical expertise in this area but I have heard that coming off Avastin can cause a "rebound effect". Something again to ask about.

You will hopefully be armed with good information after meeting with your docs!

love and hugs!
xoxox
janet

Limner

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Reply with quote  #5 

Debris, my 2 cents for what it is worth - I've had a few different chemos and four rounds of radiation treatment for different reasons to control the triple negative breast cancer.  It first metastasized to my brain in autumn 2009, then showed up a year later in my lung and spine.  Most recently in order to treat the upper spine, I had 8 radiation treatments that sort of went shoulder to shoulder across my upper chest.  I was warned that this would impact my esophagus and hurt for "two weeks".  I will say that the treatments stopped the pain I was having from the spinal met.  It also affected my esophagus so that it hurt to swallow at all for a good three weeks.  I was eating grits and smoothies, but the mere physical act of swallowing was painful. ASK about this!   Also, being conservative, my onc. did not want me on a chemo during radiation, resulting in a huge delay in getting me on xeloda, an oral chemo - I have finally started a week ago and have hopes of controlling the mets even more.  You might find that the tiredness builds after a number of treatments.  It is hard on your skin, so read the threads on various remedies,  and Sleep as much as you want.  It is an assault on your body that is intended to heal and prolong our lives.   I also drank chamomile and licorice tea to heal my throat.   Pay attention to your symptoms and push for resolution.  A month or so after the spinal radiation, I had painful labored breathing I thought was from the radiation.  It turned out to be fluid in my lung area from the met that was there untreated!)   They took that fluid out yesterday and I am much better today.  So one thing at a time with the mind that it all contributes to a positive life experience.  For me it is most enhanced by Gina and Edge and Janet and Indie and Calico, No Surrender and You!   Love and confidence that you will get the right treatment decisions  together with your doctor.  Love, Mary


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Debris

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Reply with quote  #6 
Good morning!  Mary, sorry to read about all that you have gone through - but very much appreciate the words of wisdom from your experiences.

The oncologist and radiologist have agreed to let me continue the Avastin for the duration, but the radiation treatment has changed from 30 sessions to 14... with a review of progress and continuing radiation thereafter, if needed.

Yesterday was my first radiation (for this time around). I asked these questions, and yes, there will be irritation of the esophagus (which I was not told at the planning meeting, by the way).  Not much to do for it they said, but eat soft foods and take it one day at a time as I go along.  The nurse wasn't in (it was late in the day), so they have not given me any tips on skin care yet.  However, I used 100% pure aloe gel last time, so I'll do the same now, until I'm told anything different.

The hardest part is having the mask tightened down onto the table.  I can see how this could make folks feel panicky.  And it seems everything starts to itch or twitch just when you con't move.  But it only lasts 15 or 20 minutes, so it is bearable (after the first one, anyway...)

Thanks for all the support and suggestions, Janet and Mary.

Love,
Deborah.

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“The reasonable man adapts himself to the world; the unreasonable one persists in trying to adapt the world to himself. Therefore all progress depends on the unreasonable man.”
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nosurrender

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Reply with quote  #7 
((Deborah))) May your treatments be over before you know it.
Good luck with them!!


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Debris

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Reply with quote  #8 
Well, 5 down, ? More to go. Just starting to get sensitive on the neck area. Also starting to have a sore throat. But the nodules also seem to be getting smaller. So here's hoping!

Love to all.

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“The reasonable man adapts himself to the world; the unreasonable one persists in trying to adapt the world to himself. Therefore all progress depends on the unreasonable man.”
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Primel

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Reply with quote  #9 


((((((((((((Deborah)))))))))))
delphinus

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Reply with quote  #10 
Swooping in to give a quick hug to Deborah, Primel, Gina, and Mary!

Hang in there with the radiation Deborah, you're doing great!

We're all thinking about you!

xoxox
love
janet

Calico

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Reply with quote  #11 
Deborah,
maybe drinking chamomile tea or ginger tea might help the esophagus?
Glad those suckers are shrinking!!!
Vibes and prayers to you!

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Debris

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Reply with quote  #12 
Hi! Haven't been able to Visit much in the past week, what with rushing from office to radiation, and then trying to spend a bit of quality time with DH before falling into bed. Have to say that, after two weeks of radiation, my throat is terrifically sore. It is almost impossible to swallow anything without it feeling like rocks scraping the sides of my throat going down. This includes, can you believe it, soft boiled eggs, mashed banana and mashed potatoes. Soup is slightly less painful, but needs a lot more swallowing to finish a little, which ends up with just as much hurt. It took me an hour this morning to get down two soft-boiled eggs, some juice and my supplements...

BUT, great news is that the IMRT style radiation I'm getting means the number of treatments will be reduced. So this will only continue for another two weeks, maybe. I think I can manage that - and I console myself with the thought that I might lose a few more pounds into the bargain. (I've lost 31 so far - much of which I had gained when I was on the AIs before the TNBC dx.)

I'll try visiting the other threads, but if I don't get there, know that I think about, and pray for, all the lovely people on this Forum.

Thank you all, for your good wishes.

God Bless us everyone!

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“The reasonable man adapts himself to the world; the unreasonable one persists in trying to adapt the world to himself. Therefore all progress depends on the unreasonable man.”
—George Bernard Shaw
Limner

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Reply with quote  #13 

oh Debris that esophagus inflammation is no fun!  Been there.  Hang in there - it will get better.  It seemed to be the muscular act of swallowing that hurt.   I was eating well-cooked grits, Greek yogurt and smoothies - experiment with the temperature of the food - cool to room temp felt better to me.  If you can, take the supplements apart and put them in a smoothie.    Wear a soft scarf or turtle neck to comfort your throat.  Camomile is healing & soothing.   I feel for you - Mary


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nosurrender

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Reply with quote  #14 
Deb I had IMRT rads the second time... it is much more direct and less "scattered" so it goes straight to the problem area... soooo sorry about the throat problems, tho. listen to Mary Charlotte, she knows best!

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Debris

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Reply with quote  #15 
Hello folks. Well, this should be my last week - may have a couple of "boosts", will find out today.

Thanks for the tips- throat is much easier now. However, I'm suffering with horrible catarrh all of a sudden. Any tips for what to do about that?

Mary, how are you doing?

Good wishes and (((hugs))) to all.

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“The reasonable man adapts himself to the world; the unreasonable one persists in trying to adapt the world to himself. Therefore all progress depends on the unreasonable man.”
—George Bernard Shaw
nosurrender

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Reply with quote  #16 
Deb, how are you doing??

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Debris

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Reply with quote  #17 
Hello there.  Been having some computer problems, so haven't been able to do much on the Forum.  I was given a "radiation holiday" last week.  Go to see the radiologist tomorrow, to see where we go from here.  The nodules, although smaller, have not gone away, so I'm not sure what that portends.  Also have my next infusion on Thursday, so will see what the oncologist has to say.

I've found that soups, Greek yoghurt, soft white wheat bread and ice cream have done well - though not the most nutritious of food!

Hope everyone is doing OK - hopefully I will be able to spend some time on the Forum later today, to catch up.

Blessings to all!

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“The reasonable man adapts himself to the world; the unreasonable one persists in trying to adapt the world to himself. Therefore all progress depends on the unreasonable man.”
—George Bernard Shaw
Debris

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Reply with quote  #18 
Well, I had 10 more treatments, but of a different type. This time no mask, but the machine was really close to my neck. The skin Is quite badly burned - about the diameter Of a tennis ball. And painful! Not much advice given on how to treat it, other than to use neosporin. DH came up with a way to bind the non-stick pad to neck, by winding a self-adhering bandage around my neck. Not too comfortable, but it does the job. I think, since I've been able to keep the wound covered in neosporin that it is getting better now. Also, I couldn't take my wig brushing against my neck, so I've gone wigless! Kinda scary to go to executive meetings (where I'm the only female, by the way), with my ultra short - and now snow white- (!) hair. But I've survived, and actually quite like the new freedom.

Be strong, friends.

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“The reasonable man adapts himself to the world; the unreasonable one persists in trying to adapt the world to himself. Therefore all progress depends on the unreasonable man.”
—George Bernard Shaw
nosurrender

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Reply with quote  #19 
(((Deb))) you sure have been through a tough time!! I am so sorry!
I remember for my rad burns, I would slather up a non-stick pad and stick it on the sore area. It does help, but I can imagine how uncomfortable the way you have to attach it must be.
Thank heavens it is not hot summer time- I think that would make it worse. (I hope I am not writing that and you live in the south were it is hot right now!)
Have you asked for the cooling gel pads that the rad oncs have? They are always so reluctant to give them away.
also, corn starch will help soothe and protect when you don't have the bandage on.
big hugs to you
g


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Primel

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Reply with quote  #20 

(((((((((((((((Deb)))))))))))))

Wishing you a healing weekend and a lot of rest, listening to the spring birdies.

You too deserve a break!

Catherine
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