Side effects from Herceptin only (after 6 TCH)?
 

Hi,

Will begin Herceptin only tomorrow (finished chemo 3 weeks ago) and was wondering what side effects can I attribute to H vs TCH.

I know everyone is different, but I like to be prepared.

Thanks

Janis

Re: Side effects from Herceptin only (after 6 TCH)?
 

I only had a runny nose, my RBC count remained low and still does. But overall it didn't bother me at all. I know others will chim in with some side effects but I got lucky and it was much easier then chemo.

Re: Side effects from Herceptin only (after 6 TCH)?
 

so easy compared to chemo/rads/surgery !
just tired, runny nose and achy but I think the aches may have been chemo related or even being slammed into menopause. I liked going for my 3wk infusion, felt very protected

Re: Side effects from Herceptin only (after 6 TCH)?
 

Re: Side effects from Herceptin only (after 6 TCH)?
 

Thanks everyone.

Jackie - I did check that thread but there was nothing specific about Herceptin only after TCH.

Best

Janis

Re: Side effects from Herceptin only (after 6 TCH)?
 

Just had 2nd Herceptin infusion. No chemo yet. Have a runny nose, a little tired and achy the day after, skin is dry and inside of nose is sometimes very dry. Otherwise feel great!

Re: Side effects from Herceptin only (after 6 TCH)?
 

Easy, running nose and achy joints but once I started glucosamine it got alot better. I did find that when I was in the sun alot I had tingling skin. Like prickly heat. Once I got out of the sun it went away. Your hair will start to grow and you will feel stronger everyday, well at least I did. It will be a breeze after TC. Not like chemo at all. Breath easy,it will probably be smooth sailing now. Good luck!!!!

Re: Side effects from Herceptin only (after 6 TCH)?
 

Can I ask, why did you take glucasomine? Did your doc prescribe it? What was it designed to deal with?

Re: Side effects from Herceptin only (after 6 TCH)?
 

It is designed for joints and bones. I was told it worked well. I checked with my oncologist before I took it and she said it was fine. It has worked wonderfully for me. I have no pain. I could barely walk in the mornings due to my joint pain and about 2 weeks into the glucosamine I was feeling better. I am also on femara which causes joint pain and feel pretty good. Everyone is different but it works for me. I also take Vit D and calcium and my bone density was excellent. Good luck. It will go well. Promise!

Re: Side effects from Herceptin only (after 6 TCH)?
 

Janis,

Try click on the last posting (which will be the most recent posting) of the thread unless you have reset the order ...

(I've set it so that the most recent posting will show first. I think the site only show 500 postings.)

On the maroon color stripe on top of the board click on

FAQ
User Profile Features

Other Settings and Options

• Thread Display Options - these include:
  • 'Visible Post Elements' - whether or not you want to be able to see Signatures, Avatars and Images in posts
  • 'Thread Display Mode' - how you want to view threads by default (more info available here)
  • 'Number of Posts to Show Per Page'
  • 'Default Thread Age Cut Off' - the time period for threads to be displayed - threads older than this age will be hidden

Re: Side effects from Herceptin only (after 6 TCH)?
 

Here are the last couple of them:

#628 by norkdo
· I finished my herceptin in August. Side effects: none. (slept heavily afterwards tho.)

·
#627 by Andrea Barnett Budin
#Herceptin was tolerated fairly well. Low energy. B-12 sublingual. Phyto Formula for chronic fatigue recommended by nut onc (supplement guy).

Ayr gel in a tube for nose. I used to have to blow my nose for the first 1/2 hr I got up in the morning. And it was bloody.

Poopies/bathroom drama really bad. After all is said and done, I have created a FOOD TRIGGER list that I must stick by religiously. After 5 gastro guys and every med they could throw at me, 1 Wobenzyme 1/2 hr before meals plus LIQUID IMODIUM have proven to be fantastic. My chronic IBS since the first chemo is somewhat under control. (KY jelly for diaper rash works wonders when you've spent hrs on the toilette...)

I was on Herceptin for 10 yrs. Off for nearly 5!!!!!


#626 conomyself

Overall the herceptin has been fine for me.

I have minor issues, but I don't know if they are due to Herceptin or leftover from Taxotere:

Knees. When trying to get up from a crouching position it is difficult and painful.
Stiffness. I am quite stiff after sitting.
Nostrils. They are scabby and painful.
Diarrhea. On and off, not chronic. Never know what I'm going to get.
Fluid retention. It has improved, but my face still looks puffy to me.
Energy level. I can do about 50% of what I used to do before diagnosis.

Rachael


#625 rondo
I'm sorry you are having such severe symptoms but glad to hear about your NED status. I
Definitely experienced increasing fatigue from the Herceptin during the year I was on it as well as some other milder symptoms. It is interesting that you mention dizinness and loss of balance. I have been having the same issue and am in the midst of vestibular rehab therapy now since my symptoms, which were mild for several years, have progressed over the last 6 months. The onc and ENT that I have seenthink it's caused by the carboplatin but now I am wondering about the herceptin since from what I have read, carboplatin usually only causes hearing loss(which I don't have.) They are having some trouble getting my symptoms under control so I am going to another specialist soon. No one seems to think its a brain met. Has anyone else that had TCH (or not) had this issue?


#624
frankp
kstrahm--you might check your serum HER2. A very recent Danish article pretty much concludes that chances of progressing are slim if your serum HER2 is in the normal range. You can read more at www.hertestonline.com, the March blog.

#623 kstrahm
Herceptin has become a side effect nightmare for me after almost 7 years on it. I started it in April 2006 for stage IV with liver mets. It was great at first - just a headache on infusion day and tired that day over the years it has progressed into full blown neuropathy with burning, tingling, numbness in hands, feet, legs, arm, tongue and throat, frequently dropping things and losing my balance as well. It also causes me to be dizzy and have pressure in my head as well as extremely exhausting me. I also have what the doc calls flu like symptoms which is severe pain the day off and day after the treatment in my upper back and neck. Here recently I have almost felt like I was dying the evening of taking it I was so out of it and felt so like nothing I could even explain. The verdict of this since I am NED now and have been for 6 years we are going to stop Herceptin. It is so scary and is a gamble but my body is giving me no other option. I hope to be NED for a long time because I am not looking forward to going back on it anytime soon. I certainly think the Herceptin side effects are cumulative.

Re: Side effects from Herceptin only (after 6 TCH)?
 

I have been on "just" Herceptin since Dec 26. I'll finish that up in August. I have a runny nose (that seems pretty common) and some aches but not bad. SO much easier than Taxotere! My hair is growing and I actually had a person at work comment that it looked like I tried to make a "part" at the side... ha! I had some swelling the first 2 treatments but nothing since. That could have been some "left overs".... :D

Best of luck!
Jeri

Re: Side effects from Herceptin only (after 6 TCH)?
 

I have been on Herceptin only for 12 years, starting in 01 after a 15 year hiatus, I had mets to chest. For last two annual PETS have been NED. No real problems at all. My fingernails are very weak but it never occured to me that Herc. could be causing it until another patient complained of that. It is a miracle drug as far as I am concerned. Don't be afreaid of it!

Re: Side effects from Herceptin only (after 6 TCH)?
 

Jeri - now I know what you mean by swelling. 3 weeks after my last chemo, my feet/ankles decided to greatly expand. Took diruetics for a couple of days, helped a little. Onc said the it was common, leftover from taxotere and without the steroids to keep the inflammation down. She prescribed stronger diuretics, hope they work!

Thanks for everyone's response. First solo herceptin was easy. Feeling stronger daily. Funny how you forget what "normal" feels like when on chemo.

Best
Janis

Re: Side effects from Herceptin only (after 6 TCH)?
 

I'm still gaining strength while still on Herceptin, even since I wrote the post that Jackie quoted. I'm more inclined to think that the long chemo "hangover" is more the culprit, and herceptin/perjeta are very mild.

I've also been getting acupuncture and other energy work to get the body back in order from chemo, and I'm seeing improvement in the knees and energy level.

Rachael

Re: Side effects from Herceptin only (after 6 TCH)?
 

I had my first Herceptin April 1st..."No Foolin!"
Didn't have any side effects...TODAY...what and ORDEAL!!!
I was casually eating, having a conversation with my mom, all of a sudden I felt a bit dizzy, my heart seemed to race...I asked the nurse if she could slow down my infusion...and take my blood pressure...(she just "thought" I was panicking...)...my blood was VERY high...after I caught my breath...starting the infusioin again.
Into about 10 minutes...same thing!! :(
Thank God my mom was with me as I go the the VA Hospital, there is only ONE nurse...I asked her to STOP the infusion...she took my BP...still VERY high as was my pulse...called my oncologist, he ordered a steroid...I also had an EKG...
Finally got going again...I was given 2 benedryls (as usual) before my infusion...
However, I'm thinking I did okay due to the steroid that was I was given...
WHEW...what a day...!!! THANKING GOD I MADE IT THROUGH...
Has anyone experienced problems with their heart...???

Re: Side effects from Herceptin only (after 6 TCH)?
 

I haven't but you were really lucky to have your mom with you! Are you feeling better today, what did the dr say?

When I started on Herceptin only (just a couple of weeks ago), I declined the benedryl since I wouldn't have time to "sleep it off" and needed to drive home afterwards. No ill effects, thank goodness.

Be well

Janis

Re: Side effects from Herceptin only (after 6 TCH)?
 

Hi Janis...
I'm feeling fine today...actually, I just had a slight nose bleed, at least caught it in time!! I had another one last week...probably because it's so (furnace) dry...however, I haven't had one in years and I'm NOT taking anything lightly anymore!!
At times I feel I "annoy" her...
Yes, thank God my mom was with me...she is a nurse...retired many years ago...however, we had to ask her if she could take my BP,etc as it wasn't on my arm, then she took my pulse...not sure what protocol is elsewhere??
Anyhow, I was in the Army for 13 years...thankfully...oh how thankful...I am able to recieve my treatments at the Lincoln VA...however, there are down sides to that...she called my oncologist after the second one I had...(he is at the Omaha VA)...thank goodness he was able to be reached & ordered dexamethasone. However, when I asked her what she gave me, she didn't tell me...she just offered that it was something to help...
I then had my mom ask her & she told her...she had said the "thought" she had given it before...
I KNOW she gives me a steroid with Taxol/Carbo...
I heard her call & talk in her room to this gal call on the phone as to if heart palpitations was a side effect with Herceptin...

Anyhow, first thing this morning, I called Omaha & talked with the head oncology nurse...I really like her. I was discussing what had happened, she knew that my infusion nurse had made a call to one of her infusion nurses & yes that what happened can be one of the serious side effects. The nurse in Lincoln is not familiar with many breast cancer patients...so, I'm really getting edgy as to what is going on...my husband is as well...we may make our trips to Omaha for my infusions now.
The downside to that is my oncologist has me with a Herception once a week throughout my 6 cycles of TCH...then once every 3 weeks for a year...who knows...the nurse from Omaha is supposed to call me back...
Thanks for your concern Janis!!
Truly, this support group is great...don't know what I'd do without being able to get honest answers, insight, hope & encouragement!!

Re: Side effects from Herceptin only (after 6 TCH)?
 

My mother was diagnosed with Pulmonary toxicity (interstitial pneumonitis) with additional infections (K. Pneumonae), towards the end of her 12 week Herceptin+Taxol cyle. After spending a considerable time in the hospital (4liter oxygen, Saturation at 90, fever) she's now recovering, but our oncos are uncertain whether this is a case of pulmonary toxicity caused by Herceptin or by Taxol!!! She was due for a year long treatment on Herceptin, but her oncos have suggested moving to Trykerb at this point, given that there is no way of knowing and they do not want to risk another episode of pulmonary toxicity.

Also, post her 4th taxol+herceptin cycle, she started developing unexplained tachychardia and peri-cardial effusion, which till date hasnt been explained. The oncos once again think it could be herceptin, but state that there is no way of knowing!!

Any inputs on the above situation would be great!

Questions in our mind right now - Is Trykerb as good as Herceptin? Was the episode really caused by Herceptin?? Is it a risk to move from Herceptin to Trykerb given that she is node+ve.



Summary:
Dx: Stage 2b, 2 lymph nodes, Her2+ve, ER-ve, PR-ve
MRM: Sept 21st 2012, 4 AC cycles started on Oct 10th after which 12 Taxol+Herceptin weekly cycles were started in Jan.

Re: Side effects from Herceptin only (after 6 TCH)?
 

Daughter 1...unbelievable about your mother!!! I am very sorry to hear about this!! Thank you for sharing this!!
I truly believe my infusion nurse thinks I was having a "panic attack!" That ANNOYS me in ways I cannot explain!! :(

I wonder what it would be like for her to be sitting in my chair...

I know that she isn't even aware of the "severe side effects."

I am going to be bringing up BIG TOPICS of my concerns this Monday to my oncologists...I have more info from you to go by...

Prayers sent her and your way!!