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Newbie Here, start chemo today.

SpoiledRN's picture
SpoiledRN
Posts: 6
Joined: Sep 2014

Hello all :) I just found this place last night and start chemo today. Background, I am a 39 year old (soon to be 40) post surgical nurse at a fairly busy hospital who dug in her heels for a week with shortness of breath thinking I had diagnosed myself. My diagnosis was a pulmonary embolus...how wrong I was! Initially they treated me for anxiety in the ER, breathing treatment and IM Ativan neither helped. A chest xray followed and right after that a chest CT, my xray showed a widened mediastinum and the ct showed the mass. A 10-12cm mass wrapping itself around my trachea, no wonder I couldnt breathe! I was sent by EMS to my hospital, thankfully (other hospital was over an hour away), due to my pulse sustaining the 130's once there I got to the ER, met by staff that  I knew from transfers within the hospital and because we are all one big family, definitely a perk being an employee. I was transferred to the heart floor primarily due to no beds anywhere else and was told the surgeon would meet with me in the a.m., I told my mom to be back at the hospital at 6:30 because I knew these docs rounded early. He did and at that time he told me he was working me in so that he could get the biopsy ASAP. I found out later that he called his APRN the night of the transfer and told her, "we have one of our own and I want to work her in tomorrow morning" he did :) 

My surgery went well, though due to lack of sleep I couldnt stop crying, that is better now but I still have bouts of tears. I stayed in the hospital because my pulse was still kind of high and breathing was difficult, they wanted to keep me on a high dose of Solu-Medrol in hopes of shrinking the tumor some. While there, on Saturday we got the official dianosis, Hodgkin's Lymhoma. Once I heard I immediately started getting my team in place, I wanted my port and bone marrow biopsy done before I left and Monday under general anesthesia I had both. 

I had my first PET/CT on Thursday and though I dont find out the results until today I havent really been freaking out. I cut off my hair on Friday preparing for the worst, and bought some wigs and a "chemo cap" to be ready. I havent worked since the diagnosis as I still get short of breath and my pulse races with minimal activity. My biggest fear in all of this is will I be able to go back to work after treatment, one doc said working wouldnt be a good idea during treatment especially since the bulk of the time will be during flu season. I start on AVBD but my B isnt Bleomycin because my pulmonary function test was crap which I think is due to the mass but my onc was very happy about the substitued drug, it's a second line but and focuses in on the tumor cells. 

I was reading a Lymphoma Facebook page last night about how people have changed since the diagnosis and treatment, a lot were weaker and some said they felt like a completely different person and some seemed too tired to do much of what they did prior. I dont want to be that person, I want to get back to normal, I want to work, I expect a new normal but I want it to be similar to my life now and that now is my biggest fear. I think that is what I need to hear, I need to hear that life goes on after treatment and that I can get that life back as close as I can to what I have now. I am not naive, I know I will be changed, but I am hopeful that change will not stop my future plans in regard to my nursing career and just living my life. 

Chris17's picture
Chris17
Posts: 175
Joined: Oct 2010

I hope all goes well for you, i have non hodgkins lymphoma been dealing with it since 2008, i am on my 3rd diagnosis, on a watch and wait, but symptoms are more noticeable, my first diagnosis was mediastinum it had wrapped itself around the blood vessels to my heart and lungs, had a port placed, had CHOP and maintenance chemo  after the CHOP went into remission for a year, did Zevalin, Jan of 2013, remission was 5 months so here i am dealing again, keep up a good fight, dont ever give up.

jimwins's picture
jimwins
Posts: 2111
Joined: Aug 2011

Welcome to the group.  You'll find very nice folks here who will be chiming in soon. 

Change is inevitable with this but it's not all bad as you will see :).  Please feel free to come here with questions, vent, offer support when you're up to it, and even go "crazy" if you need to :).  You're an experienced nurse so I think some of this will be easier and harder for you but I can tell you will get through it just fine.  Just know you're not alone here.  Humor and attitude are free weapons in this battle - I pretty much tell everyone that. 

Big hugs and warm and positive thoughts,

Jim

animal animated GIF

 

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3517
Joined: May 2012

Spoiled,

I have never read of a case moving forward as quickly as yours has. 

I had very advanced Hodgkin's, but a very indolent strain. My heart was being pressed on by the nodes, which was causing cardiac pain -- that is how my disease was discovered. The first night, the ER docs thought that I had unstable angina.  What STRAIN of Hodgkin's do you have ?

The Bleomycin can cause all sorts of lung injury, so it was wise of them to replace it with something else. I am intersted to know what your other "B" drug is. The great bicycle racer Lance Armstrong had Bleomycin removed from his drugs, after he read about the common lung problems it causes. I currently have a bit of fibrosis, but it is unclear whether the Bleomycin caused it or not.

I didn't work after my fourth infusion (I had 12, which is six cycles). Heck, I hardly got out of bed.

I am five years clean since treatment, and my energy slowly came back to pre-cancerous levels.  You are such a bundle of energy in your writing ! I doubt seriously that this will cause you to leave nursing.  But be aware that side-effects sometimes take a long time to hit, and recovery can be slow for some. Occasionally a new patient will write that they had their first infusion the day before, but "they still fell fine." The train is still coming out of the tunnel: In most patients, ABVD side-effects do not strike hard until the third or subsequent infusions, so be aware. Allow yourself to rest; this is a trial, even for the best.

max

 

amanda_christy's picture
amanda_christy
Posts: 60
Joined: Aug 2014

Hey Max, ur totally freaking me out! im on infusion #3!!! :-(

Still attending ladies bootcamp and going for walks/runs. Do know i may hav to slow down but not yet :-)

No no cat: https://www.youtube.com/watch?v=SDj-obZr7WI

:-D i forgive u lolz

SpoiledRN's picture
SpoiledRN
Posts: 6
Joined: Sep 2014

Thank you all for your insight and support, I have Nodular Sclerosing Hodgkin's Lymphoma which was noted to be growing for a few months but since I've had bouts of difficulty catching my breath since I was a child I didnt really pay attention right away. My cardiothoracic surgeon said the mass was like leather. Prior to chemo yesterday I met with my oncologist and he said that my PET/CT showed no more involvement that what we already knew, so no abdominal involvement diaphragm etc all good so stage 2 :) also my bone scan was negative all good news!! 

Chemo went well one of my nurse friends kept texting me, it's just antibiotics, to which I kept replying, that kill EVERYTHING :) So far I feel pretty good, but I know this is temporary, I feel I may be nauseated, like a lump in my throat so my Zofran is close. My chemo was in within 2.5 hours including premeds, the Bleo substitute is Brentuximab Vedotin it went in as 30 minute infusion and my nurse sat with me to monitor me for any side effects, none were noted except my BP went down which was up due to anxiety. I start 3 days of Neupogen today, I wish I could do them myself at home rather than potentially pay a copay for 3 days :( Aww well, such is life. 

givingrace's picture
givingrace
Posts: 161
Joined: Nov 2012

Hi spoiledRN,

You sound alot better than the first post. I wish you smooth sailing . Be aware next few days may be difficult but you sound like you will beat this. It's great you had no more involvement. 

Keep fighting and keep us posted.

I'm amazed at how this forum really does understand and care. 

Hugs

~GG~

SpoiledRN's picture
SpoiledRN
Posts: 6
Joined: Sep 2014

Thank you GG, so far last night was my worst night a lot of nausea but Zofran and Compazine helped that. :) 

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3517
Joined: May 2012

How many total infusions will you have ?  If only three, you might actually be able to stay at work, or at lest get back fast after it's over. You might not even loose all of your hair. 

Smooth sailing to you,

max

SpoiledRN's picture
SpoiledRN
Posts: 6
Joined: Sep 2014

Thanks Max :) I'm probably going to have 6-8 cycles, my biggest fear right now, which probably shouldnt be, is if I have to do radiation later. It's so far off at this point that it shouldnt be a concern right now but it is. 

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3517
Joined: May 2012

Spoiled,

Six cycles used to be the recommended maximum dosing of ABVD (it equals 12 infusions, with two infusions per cycle).  Most Stage III and even Stage IV Hodgkin's do six cycles, and only rarely have I heard of going up to eight (which would be 16 infusions, or eight months of treatment).  If you do six or eight CYCLES, you are indeed in for the long haul, but as I said, you are so vibrant you may blow through it with all of that beautiful energy intact. 

I did way over the lifetime recommended dosage of Adriamycin (also known as Doxorubicin and sometimes Rubex, and informally as "Red Devil".  Adriamycin is of course the "A" drug in ABVD, but it is also in CHOP, given for NHL. These letters in the acronyms do NOT always match the first letter in the drug that they corrospond to, which creates some confusion at times). 

I had to have a heart scan last year, since large doses of Adriamycin can cause thickening of the heart muscle, which then mimics congestive heart failure. This reaction can be delayed for up to five years or more after treatment ends.  My ejection fraction (pressure that blood is forced out of the heart at,  for the non-RNs out there) was the max normal number of 65%, and all valves were normal.  Something on me has to wrok right ! 

The incidence of this heart muscle thickening is rare, at around 2% of users, but it does contain a warning for patients going to receive chest radiation that they may want to lower their lifetime dose. Something to ask you onc about.  Adriamycin commonly causes nails to turn black or purple (it did mine), and the eyes to water. My eyes started pouring water for a few hours one day, and I learned that the drug had irritated/inflamed the tear ducts.  Thankfully, that side-effect never returned in the remaining months of treatment.  It is also the drug that causes urine to turn red or reddish in color for up to a day or so after infusion, which is totally normal and expected. Adriamycin is a clinical VESICANT (blister agent). Most clinics will not administer it without a port .

If you do 12 or more infusions of the vinblastine, neuropathy is VERY likely, at least short-term. I got a serious case of that, and my feet not only went numb -- the numbness went to my waist at times, and my hands were next to worthless.  (Note: I also got over the lifetime recommendation of vinblastine, and in fact all of the drugs in the ABVD combo.)  I still have significant neuropathy today, five years later. I was in a clinical trial for a treatment (a cream, which proved to be worthless), and the nurse running the trial at my hospital told me she had heard of patients getting neuropathy so bad that their entire body felt numb, but that is an extremely rare situation. Keyboarding is still EXTREMELY cumbersome for me today; typing this letter might take 30 minutes, since I have to make so many corrections. I could not turn pages in a book or newspaper hardly at all for the first year or thereabout. 

There is no real treatment for chemo-induced neuropathy, but people discuss "home remedies" quite a bit.  (Of course, you can read on the internet how eating a rare rainforset root cures Stage 4 Pancreatic cancer in two weeks, but these people then just die. My [point is that 99% of the alternative therapies on the Internet are bogus.) In clinical trials, the various home remedies for neuropathy do not beat placebo, but it cannot hurt to try them (actually I have not verified this in about two years, but the depression-medication-based cream that I was in a test for failed to be beneficial). There are some drugs for diabetes-based neuropathy that are FDA approved, I believe.  Time usually does either eliminate it or at least reduce the severity, and my case is much less severe now than it was initially.  The drug's warning recommend that a patient feeling neuropathy tell their doctor, but all that really does is get him or her to lower the dose, if they feel like they can safely do so and still kill all of the cancer.

Some patients have very few of these side-effects, and I hope you will be one of them,

max

http://chemocare.com/chemotherapy/drug-info/adriamycin.aspx#.VCb9W-ktC70

 

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amanda_christy's picture
amanda_christy
Posts: 60
Joined: Aug 2014

I too was diagnosed with Nodular Sclerosing Hodgkin's Lymphoma, stage 1A. 3 lymph nodes in the supraclavicular region... (like from the left center of my neck running along my clavicle) Whatevs im not a doctor lolz

Im only having 2-3 cycles ABVD then radiation. Bit nervous about radiation like u. The evening after chemo i find i am more and more tired with each subsequent infusion but then back to just feeling off on days 2 and 3. On Ondansetron which is a great anti-sickness but doesn't help my constipation any lolz. tmi!

Glad ur first chemo went well.

Keep smiling SpoiledRN :-D

 

amanda_christy's picture
amanda_christy
Posts: 60
Joined: Aug 2014

U have a cool attitude about it all. Its good to stay positive.

Had my 3rd ABVD infusion yesterday and was laughing the whole time with my nurse. Hilarious!! O and i ate everything in sight. Had my 'snack drawer' and a good book i never got to. Fell asleep with mouth open! hahahahha! I know, totes embarrassing! We spoke about everything from our husbands to Fam Guy and Roger in American Dad :-).

Ive responded well to treatment and my bloods r back to normal at least 3days pre chemo. They havent had to reduce my Bleo. My kidney/liver test r also perfectly normal. Wasnt even sur i was losing hair till a week ago, its really ust a few grains a day and some days nothing at all.... Havent cut it yet, its really long and thick. Next month or so will be telling though but Onc says it may just thin. Dunno. If it thins too much will just chop it off Only having 3 cycles then Rads. Halfway mark was yesterday.

I still go for walks/runs 3 days a week and when im not at risk for infection i go to my ladies bootcamp. i need the social aspect of it. If u closet urself away it will only make u depressed. When drs tell me to take it easy i think. "take it easy and do what? stay at home and obsess about cancer?" O, i still work but hav cut back on how many new projects i take on. Im a freelance web/graphics designer so i can work from home. Was going to set up my own office b4 diagnosis - and i still will - hopefully early next year.

Stay positive and feel free to share whenever the mood strikes u

uv been added to my prayer list :-)

Christine

 

SpoiledRN's picture
SpoiledRN
Posts: 6
Joined: Sep 2014

Thanks Christine :) I havent gotten to a point where I doing much activity though I didnt do much outside of work before this happened. I've a couple of outings that have tired me out in the last couple days but I'm hoping in my off-week next week I'll feel better. Prior to my shortness of breath and subsequent diagnosis I had planned on trying out the the Couch to 5k program, I'm think it may be worth a shot now. 

Jeff148's picture
Jeff148
Posts: 184
Joined: Apr 2014

It sounds like you have a great attitude. Your experience as a nurse will help too. Just take one day at a time and before you know it, you will be through this!! I just got through R-ABVD. While it wasn't easy, it was doable!!! Many on this forum give great advice/information. One thing I found helpful was really taking advantage of the days you feel good!!

Jeff

SpoiledRN's picture
SpoiledRN
Posts: 6
Joined: Sep 2014

Thanks Jeff, I've read through your blog and you are truly an inspiration!

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