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Post Treatment Syndrome?

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musette green View Drop Down
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    Posted: Dec 19 2009 at 12:24am
Hi all,
I've been off line for a little more than a month so I haven't a chance to see or read even a fraction of all of the things posted since I was here last, but I have a problem. I'll put it out there in the cosmos for anyone to respond. Here goes:
Near the end of October I returned to work as a Med-Surg/Ortho nurse on a very busy unit doing 12 hour shifts. For the first month and a half I felt good, minimal fatigue and muscle/bone pain. Lately that has changed somewhat and I have been experiencing a return of the fatigue and now increasing joint pain. My hips, shoulders and knees ache nearly constantly. Sometimes I even have problems with the joints in my fingers. It is hard for me to believe that this is related to chemo, so far down the road. But I think the most curious issue has been sudden episodes of shortness of breath accompanied by a heart rate in the 130's for 10 to 20 minutes, and then as suddenly as it came on it stops. I could see this happening if I had just finished some great feat of strength or endurance, but more often then not it happens when I am sitting still, not moving. It has even awakened me from a peaceful sleep several times.  I have an appointment with my oncologist on the 28th of this month, but until then I want to stay cool, calm and collected.  One person I met during radiation has been having the same kind of problems with sudden rapid heart rate and breathlessness. She is being worked up now but her PMD thinks the heart and breathing issues might be a side effect of her radiation treatments.
My last chemo was Jan.11th 2009 and I finished rads 9/11/09.  Is anyone having or had similar problems?  If yes how long did the problems last?
Thanks, Hope some one can help!







Edited by musette green - Dec 19 2009 at 1:18am
DX 10/08. IIB,gr 3, 2.5cm. TNBC, BRAC1&2-, nodes+(left axillary, supraclavicular, ant. mediastinal & IM). Neoadjuv. chemo 4x C/T. Left mast.3/09,completed 40 rads 9/09. Reconstruction pending.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote dmwolf Quote  Post ReplyReply Direct Link To This Post Posted: Dec 19 2009 at 12:38am
It sounds to me like the breathing/ heart rate stuff is panic.    As in, panic attacks.  Panic disorder, however mild, as a post-treatment syndrome makes sense to me.   Sore joints in response to chemo happens, even after the fact, triggered by long workdays.  Then sore joints makes you think 'cancer' fear fear fear which leads to breathlessness which leads to more fear and there you have it your heart rate is through the roof.  Maybe the process is even a hairsbreadth subconscious.    That's my hypothesis in a nutshell.    Give it some time.  You are barely out of treatment, sweetie.  Maybe it is too soon to be doing 12 hour shifts.
love,
Denise
DX 2/08@43 stg II IDC; gr2,0 nodes. Neoadj chemo, first ACx2 (fail) then CarboTaxotereX6(better). Lump, Rads done 11/08; Clodronate. False alarm queen: PetCT lung & TM marker. NED. PBM w/recon 9/10.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote musette green Quote  Post ReplyReply Direct Link To This Post Posted: Dec 19 2009 at 1:10am
Denise,
Thanks, You may be right. I have considered panic attacks /anxiety attacks as a possible source for the rapid heart rate issues. Strangely, I feel very strong and settled mentally and emotionally. I'm not terribly sure why this would happen now,  in my years before cancer I've been through stuff that  that would curl your hair.  I should add that I have difficulty sleeping in any other position other than upright, flat in bed feel like I'm suffocating. As far as work goes I don't have many choices right now.  All of the area hospitals here are 12's. I did alter my schedule so that I would not do more than 2 12's back to back. Anything less than full time is not an option, need moola to pay for continuing my education ( so I can get off the floors ), as well as 2 kids in college. Also need to be full time to keep my health insurance.  I guess I am  surprised my joints could be hurting from chemo effects nearly 11 months down the road. Is that really possible? How long can this keep trying to mess with you?


Edited by musette green - Dec 19 2009 at 1:49am
DX 10/08. IIB,gr 3, 2.5cm. TNBC, BRAC1&2-, nodes+(left axillary, supraclavicular, ant. mediastinal & IM). Neoadjuv. chemo 4x C/T. Left mast.3/09,completed 40 rads 9/09. Reconstruction pending.
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Donna Z View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Donna Z Quote  Post ReplyReply Direct Link To This Post Posted: Dec 19 2009 at 2:28am
Hi Musette. I too am a nurse heading back to work in the next week or two. It is good that you have the onc appt soon. I am guessing but hope they do scans and a cardiac work-up. It is hard to guess how our bodies respond post all the treatment we get. So far I am experiencing the achy joints and actually had a bone scan it was so worrisome; that came back all ok. I hope for you it all settles down. Wishing all the best in your further education. Are you working on your Masters??

Donna
Dx 03/09 TN, Stg 2a, gr 3, 1.7 cm Taxol X 12, FAC X 4, segmental mastec Sept 10/09,
1 pos/29, from Canada, Treatment MDAnderson, rads X 30 started Oct 29/09. Zometa start Nov 24/09
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Post Options Post Options   Thanks (0) Thanks(0)   Quote kirby Quote  Post ReplyReply Direct Link To This Post Posted: Dec 19 2009 at 2:38am
It does eventually go away...or one gets used to the "new me." Gawd did I hate that saying. All I wan'ted was the me I was/had. Glucosimine chondroitin for the muscle aches help. Have your thyroid checked for reason for fatigue. Maybe yoga breathing excersizes for the heart rate.
I started having these pains going up and down my throat that had me freaked well after tx. Several people did suggest I was perhaps having anxiety or panic attacks. Fortunately my onc immediately said "sounds like esophogeal spasms" prescribed a pill to take at onset which took care of it immediately. By now they rarely ever happen. Who knows why it started or what it was caused by.
Good luck with your appt. Let us know the outcome.
kirby

dx Feb. 2001. Age 44
Lumpectomy

2cm. no nodes stage 1 grade 3

4 rnds AC, 35 rads
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Post Options Post Options   Thanks (0) Thanks(0)   Quote dmwolf Quote  Post ReplyReply Direct Link To This Post Posted: Dec 19 2009 at 11:47am
Not being able to sleep unless upright is a red flag for anxiety/panic, actually PTSD.   Given my own experience and your description, I wonder if the trauma from cancer has somehow awakened old traumas so you are now experiencing delayed reactions to old and new together.  When I went to Commonweal I discovered that some of the fear I was experiencing after being diagnosed was strangely connected to old childhood trauma I thought I had long put to rest.   Just a thought.  (do you have a good therapist?)
love,
Denise
DX 2/08@43 stg II IDC; gr2,0 nodes. Neoadj chemo, first ACx2 (fail) then CarboTaxotereX6(better). Lump, Rads done 11/08; Clodronate. False alarm queen: PetCT lung & TM marker. NED. PBM w/recon 9/10.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote trip2 Quote  Post ReplyReply Direct Link To This Post Posted: Dec 19 2009 at 2:51pm
Yes Musette,
 
I have read these things can creep up on us months, possibly years after treatment.
 
I really hope you see a Cardioligist and have a work-up.  A racing heart could be many things.
I had rapid heart beats hitting me out of nowhere years ago and was diagnosed with Angina. 
 
I too have to sleep with 3 pillows because I have lung issues, trouble with breathing.
 
Let us know what you find out and please take care of yourself.
Stage 2 2003
Stage 1 2007
BRCA 1+
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Post Options Post Options   Thanks (0) Thanks(0)   Quote krisa Quote  Post ReplyReply Direct Link To This Post Posted: Dec 19 2009 at 3:13pm
musette,
racing heart --maybe potassium level snafu?
the fatigue, muscle and bone pain stayed with me for a long time.  it has been an ebb and flow--some days are better than others.  we are all different in the side effects that we endure from treatment.  i am a year and half from completing treatment and I still have fatigue ..the muscle and bone pain have lessened--finally!
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Lillie Quote  Post ReplyReply Direct Link To This Post Posted: Dec 19 2009 at 6:04pm
Hi Musette,

I am of the opinion that most women who have had surgery on the breast and lymph nodes followed by chemo and radiation are never quite the same again.

I talked with a lady who had a mastectomy, lymph node removal and reconstruction 15 years ago and she still has some swelling, fatigue and stiffness in her arm. Her cancer was caught so early she opted not to do chemo, but took tamoxafin for 5 years.

I am three years away from treatment and I have more joint and bone pain than I ever had before. I don't have the stamina that I had before cancer.   I did go back to work after treatment for two years. 5 eight hour work weeks. I was always conscious that I was more fatigued and achey than before cancer. I retired in April '09.

Now I volunteer at an oncology clinic every Friday. If the drug reps. bring in lunch I am invited to eat. Yesterday, I heard a rep talking about neuropathy in breast cancer patients after taking taxol and avastin and some other drugs. He said we tell them a few months tops and the neuropathy is gone. I said, "I disagree". He ask what grounds I used for that statement and I said "personal experience". One of the oncologists was sitting at the table and he said, "I never give my patients a time line for symptoms to disappear because everyone is different."   I told them my neuropathy has diminished to a very manageable level, but some people expect it to be completely gone and it may not be.   The drug rep said maybe they needed to consult the patients more. I agreed.

Anyhow... You may be pushing yourself beyond what your body is ready to do. Or you may have to deal with the fatigue and pain to continue working. I know how it is to need to work to have health coverage. Just be assured that you are not alone in your experience and take comfort from that.

Love in Christ,

Lillie
Dx 6/06 age 65,IDC-TNBC
Stage IIb,Gr3,2cm,BRCA-
6/06 L/Mast/w/SNB,1of3 Nodes+
6/06 Axl. 9 nodes-
8/8 thru 11/15 Chemo (Clin-Trial) DD A/Cx4 -- DD taxol+gemzar x4
No Rads.
No RECON - 11/2015-9 yrs NED
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Post Options Post Options   Thanks (0) Thanks(0)   Quote kmartin Quote  Post ReplyReply Direct Link To This Post Posted: Dec 20 2009 at 7:40pm
I have stiffness, and the bottoms of my feet hurt. They don't burn or tingle, they hurt, esp. after being busy, then sitting for a while...trying to walk is painful. My boss is 5 years out from CT for TNBC and has quite severe neuropathy, taking Cymbalta.
 
 I am also a nurse who is now teaching nursing. I don't think I will ever return to my previous level of wellness, or fitness...oh well, the "new normal."
 
Hate that...don't you?
 
Kathy
Found Lump, 2/8/08
Bx IDC, Stage 2, Grade 3, TN
Lumpectomy, axillary node dissection 3/11/08
4/33 positive nodes
TAC x 4, AC x 1
RT x 33-finished 10/14/08
BRCA 1 & 2 Negative
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Dec 20 2009 at 8:39pm
Lillie,

I loved your story about the drug reps.  If only they'd talk to patients they'd learn so much!

Donna
DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15

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Post Options Post Options   Thanks (0) Thanks(0)   Quote Carol (Tenn) Quote  Post ReplyReply Direct Link To This Post Posted: Dec 21 2009 at 8:08am
Dear Musette,
Welcome back....hate you are going through this..but guess what...you are not alone.
I finished my radiation two or three months ago. I had the exact same thing as you describe. Honestly, it scared me to death. I thought I had heart disease....but now I know it was anxiety causing all the problems. I couldn't even complete a sentence without losing my breath. I happy to tell you it's almost...not completely..but almost gone. I went to my primary doc and she scheduled tests and when the time came to go for them, I had improved so much that I cancelled. Your body has been through so much, I truly feel like Lillie said, that you never entirely get over it.
I hope this experience I had has helped to ease your mind. BTW, are you taking any meds like Zoloft (what I take) or meds of this type?
Love and Prayers,
Carol
St 2 Gr 3, A/C/T, DD
Radiation x35
Rec chest wall 07/09
Radiation x28
NED 10/24/11
NED 10/5/12
NED 03/15/13
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Post Options Post Options   Thanks (0) Thanks(0)   Quote musette green Quote  Post ReplyReply Direct Link To This Post Posted: Jan 04 2010 at 8:11pm
Hi all, 
Just wanted to drop a line to let you know what has happened. I was having pain in my joints with increasing fatigue, and even scarier a rapid heart beat with shortness of breath. I saw my oncologist  and she thought it might be a thyroid malfunction and ran some blood tests. I got my results back today and my thyroid is going through something like throiditis. Best explaination I was given is that either the chemo or radiation damaged my thyroid and it is over producing in bursts, thus the symptoms. The doctor think this is transitory and eventually ( next few weeks of months?) my thyroid will completely fail. My radiation involved hitting the supraclavicular nodes. My oncologist thinks that is where this problem arose . I read about one of the other people talk about shielding the thyroid area.  I asked my radiation oncologist about this, but I was told that it wasn't needed because I was getting my radiation in the IMRT format, supposed to be very precise. However the treatment to the s.v.c.nodes were wide blasts not part of the IMRT treated areas.  My oncologist is upset about what I was told. She called the radiation center and spoke to the doctor and his answer was almost "Oh well, at least she is alive to complain about it, if we would have told her it would have just caused more anxiety."  People don't get me wrong, I am very glad I got treatment, I just think that some  one could have mentioned this as a side effect, like they did about the possiblity of radiation burns. At least I would have an idea of what to look out for and not start to doubt my own sanity.
Bottom line stick to your guns if you think some thing different needs to be done, Insist on full or a much information up front, I know every possiblity can't be covered up front , but at least they should be honest with you about the most common things. Then, If you have the where with all do as much research as you possibly can, be your own best advocate!
DX 10/08. IIB,gr 3, 2.5cm. TNBC, BRAC1&2-, nodes+(left axillary, supraclavicular, ant. mediastinal & IM). Neoadjuv. chemo 4x C/T. Left mast.3/09,completed 40 rads 9/09. Reconstruction pending.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote kirby Quote  Post ReplyReply Direct Link To This Post Posted: Jan 04 2010 at 8:36pm
good for you for getting to the bottom of this and your onc being honest. I completely agree with your stance. I do wish they would say a bit more so we don't feel we are crazy. I hope you told the radiologist where to get off. Politely of course...so it will have more effect.
kirby

dx Feb. 2001. Age 44
Lumpectomy

2cm. no nodes stage 1 grade 3

4 rnds AC, 35 rads
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Post Options Post Options   Thanks (0) Thanks(0)   Quote dmwolf Quote  Post ReplyReply Direct Link To This Post Posted: Jan 04 2010 at 9:24pm
Thyroids are absurdly important, aren't they?  I had subacute thyroiditis (self-resolving after three months) and boy was I miserable.   Take care of yourself, Musette.
Love,
Denise
DX 2/08@43 stg II IDC; gr2,0 nodes. Neoadj chemo, first ACx2 (fail) then CarboTaxotereX6(better). Lump, Rads done 11/08; Clodronate. False alarm queen: PetCT lung & TM marker. NED. PBM w/recon 9/10.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Jan 04 2010 at 9:41pm
Musette,

I'm so sorry you had to go through all this.  It makes me upset how the radiation department handled everything.  Thank you for warning us.  Full disclosure up front would have been best for you, not after you're having symptoms. 
DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15

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Post Options Post Options   Thanks (0) Thanks(0)   Quote mainsailset Quote  Post ReplyReply Direct Link To This Post Posted: Jan 04 2010 at 10:34pm
As all can tell from my ranting lately I'm on the trail of the thyroid as I've come to believe that chemo & radiation are having more of an impact on our thyroids than anyone has paid attention to before. It was me that asked for the thyroid/clavicle shield during radiation and I'm terribly sorry that you were not afforded the opportunity to have one placed. It takes all of 15 seconds each treatment!
 
What I'm learning through trial and tribulation with the thyroid is that even small increments of change affect your body and your metabolism. For us with the threat of recurrence hanging over our heads of course we want to get our bodies back into fighting strength as soon as possible after all the treatments but I've also learned that balance is important and not to go chasing after one thing while ignoring another.
 
The thyroid will impact your cholesterol while it's giving you all these other symptoms so good to ask your oncologist to add more tests to your blood work. It's a great relief to hear that your oncologist is taking up the fight with you. Cudos to him!
 
dx 7/08 TN 14x6.5x5.5 cm tumor

3 Lymph nodes involved, Taxol/Sunitab+AC, 5/09 dbl masectomy, path 2mm tumor removed, lymphs all clear, RAD 32 finished 9/11/09. 9/28 CT clear 10/18/10 CT clear
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Post Options Post Options   Thanks (0) Thanks(0)   Quote rena Quote  Post ReplyReply Direct Link To This Post Posted: Jan 05 2010 at 8:56am
Musette, I'm glad you got a clear answer and sorry that you have another challenge. I am disgusted by the radiologist's cavalier attitude. It's that very attitude--"What are you complaining about? At least you're alive"--that caused me to change oncologists after 20 years.  Doctors have come a long way, but some still have little regard for how their decisions affect us down the road and for our quality-of-life issues.  Yes, I'm grateful to be alive, and I count my blessings (e.g., 26 nodes removed and no lymphedema), but the treatments changed me forever and in ways I'm probably not even aware of. With all the knowledge they have now--such as the need to protect the thyroid--this should never happen. I send you my best wishes. Rena
Diagnosed 9/86. 1 cm tumor, 22 positive lymph nodes. CMFVP chemo, weekly for one year. 7 weeks radiation. BRCA2-positive. Multiple attempts at reconstruction (three's a charm)
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Post Options Post Options   Thanks (0) Thanks(0)   Quote trip2 Quote  Post ReplyReply Direct Link To This Post Posted: Jan 11 2010 at 10:35am
Musette,
 
So sorry to hear you are having problems and I agree, kudos to your Oncologist.
 
I am having thyroid issues and was told by my surgeon we can get what he called a "splash" on the thyroid area during radiation.  I'm with you, I think we should be given more information besides the same old "oh you may get a little burn, here is some cream".
 
Who knows what the chemo and rads have done to our bodies which could cause problems down the road.
Stage 2 2003
Stage 1 2007
BRCA 1+
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Post Options Post Options   Thanks (0) Thanks(0)   Quote TNBC_in_NS Quote  Post ReplyReply Direct Link To This Post Posted: Jan 11 2010 at 12:18pm
Oh my ladies, why is it such a struggle for us women? My clavicle was radiated without a shield so I guess now I must make sure that my thyroid is functioning properly....Why must we struggle so much to take care of ourselves?? My prayer to today and always is that whatever we need to know about our side affects is shown to us in a way that will get our attention without having a medical intervention!
Helen in NS
Diag@57TNBC04/092.5cm Lquad 05/09 TCx4Radsx30CT03/01/10 FU03/31/10ClearBRCA- 01/2011 RTNBC BMX 06/14/2011~2013 clear
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