Herceptin - Quick Side Effects Poll
Comments
-
I had my third Herceptin only treatment last week.
Infusion day-- fine.
Day 2 - dragging.
Day 3 - hit a wall at noon. Usually I can power through tired. No way.
Day 4- slept through the morning. Perked up in the afternoon.
Since then, I've been fine.
This is a weird one!0 -
Lady Grey - it might be the premeds doing that to you. Good to see you having the treatments
((((((((((((((HUGS)))))))))))))))
Sue
0 -
Graylady I asked last time not to have pre-meds and I had the same experience of exhaustion except for me it doesn't go away because my heart is working much slower. The reason I didn't do pre-meds is due to go to work. I had to drive myself that day and didn't to drive after taking benadryl. After two weeks I'm just beginning to feel a little more energy and in a week I will hopefully have my fourth and last infusion at least for awhile.
0 -
when i was doing chemo and herceptin my living room smelled like a small chemical factory! It went away as soon as I was done with treatment.
0 -
I've been on Herceptin since Oct 2011 (along with 4 cycles of CTH at the beginning). I've been done with chemo for 4 months now (i.e. on Herceptin treatment by itself for 4 months every 3 wks through a port). At first I didn't feel like there were any side effects since I felt great after chemo. Now, I notice that my joints are achy and tight (I have difficulties getting up from a sitting position). Nose is constantly drippy and fatigue is still there (though not sure if it's remnants of chemo). I also have regular hot flashes, brow/lash loss and thin nails but I think this is the remaining side effects of chemo as well. Hair on my head is not growing back as fast as my chemo pals who finished chemo at the same time but they are not taking herceptin so I think the herceptin is slowing down my hair growth (note: my hair normally grows very fast). Ovearall not too bad compared to chemo but I hope that it all goes away after treatment. Does anyone know how long it will take for the joint aches to go away after treatment ends??
0 -
I've been on Herceptin since Oct 2011 (along with 4 cycles of CTH at the beginning). I've been done with chemo for 4 months now (i.e. on Herceptin treatment by itself for 4 months every 3 wks through a port). At first I didn't feel like there were any side effects since I felt great after chemo. Now, I notice that my joints are achy and tight (I have difficulties getting up from a sitting position). Nose is constantly drippy and fatigue is still there (though not sure if it's remnants of chemo). I also have regular hot flashes, brow/lash loss and thin nails but I think this is the remaining side effects of chemo as well. Hair on my head is not growing back as fast as my chemo pals who finished chemo at the same time but they are not taking herceptin so I think the herceptin is slowing down my hair growth (note: my hair normally grows very fast). Ovearall not too bad compared to chemo but I hope that it all goes away after treatment. Does anyone know how long it will take for the joint aches to go away after treatment ends??
0 -
Happy,
I fininshed a year of Herceptin in Feb. My joints are finally easing up. I also had the runny nose, took Clariton for that. Are you getting H over 30 minutes or longer? I initially started H alone running over 30 minutes. After listening to the ladies here I had them run it over 60 minutes. The SE's werent as bad. I also took Prilosec for a funny tummy I had during infusion.
0 -
It wasn't until a few days ago when I really noticed a difference in my hair. My daughter commented that it seem thinner. I was going to let it grow down to my shoulder, but I' don't want stringy hair so I trimmed it.
The wikiepedia ...The HER receptors are proteins that are embedded in the cell membrane and communicate molecular signals from outside the cell to inside the cell, and turn genes on and off. The HER proteins regulate cell growth, survival, adhesion, migration, and differentiation
So it's logical our hair would grow slower resulting in thinner hair. I suppose if you did chemo as well you might think this problem would be a chemo side effect. I'm doing herceptin alone so I can tell you it is one of many side effects.
So far my side effects from herceptin are
1. LOWER EF (lower 15 points after 2nd infusion)
2. Fatigue (tire easily)
3. PVC's (heart palpitations)
4. At times breathless
5. Need stronger reading glasses...Eyes
6. Sore joints...not horrible yet
7. (first two weeks only - chest pain)
8. Thin hair
Well, one side effect that everyone seems to have that I don't have is a runny nose. I haven't noticed a lot of changes in my nails, but I keep them short due to paint getting under my nails so I wouldn't know if there was a change.
0 -
I have problems with my eyes. I'm 39. People told me it was just age. Bogus.
0 -
Ton Lee, vitamin B12 deficiency results in numb/tingling arms and legs. As a Pegan (fish-eating vegan!) I take a B12 supplement and the tingling in my arms comes back if I forget.
0 -
Starella, re the chemo smell, yes, but only I notice it. It doesn't even bother the cats.
0 -
Got my MUGA scheduled for next Tuesday. Here's hoping for a good EF!
0 -
Best wishes moonflwr!!!!
0 -
Hi Ladies.. I also have the runny nose, sore joints ( thought joint pain was from Tamoxifen), Heart palpitations.. Can feel my heart beating when I sit or lay down.. My last Muga showed a 11% drop in FE (started out at 67% now at 50%) Has slowly dropped with each muga.. Am now on Herceptin break. Another Muga in mid May Hopefully FE is up o I can continue treatment.. Want my last five Herceptins
0 -
Ossa, it is a weird sensation to feel your heart thump when sitting or resting. Sometimes I even feel my whole chest quiver.
For me due to strong heart palpitations after the first and second infusions my oncologist sent me to a cardio specialist. My EF dropped 15 pts. I went from 65 to 50/55. She wants me to do the 4th one and again do a echocardiogrm. If my EF is below 50 she is taking me off Herceptin. I've now had 3 and tomorrow I'm due for my 4th. I'm really torn if to do the 4th. If I cancel the appointment, I fear that my oncologist will be so frustrated with me that she will drop me as a patient. Then I think one more Herceptin probably won't make a difference, but then it could be the straw that breaks the camel back. I've read from others at bco the heart damage can be permanent. This scares me.
I can see the handwriting on the wall, lawyers ads for those who took Herceptin with heart damage.
There are so many who have no problems. I wish I were one of them
0 -
everbarry.. My onc cancelled my treatment because my FE was 50% but more so because it dropped 11% from my last Muga.. another muga before my next treatment.. There is a small % that will have heart damage with Herceptin.. I was told about all side effects before starting treatment .
0 -
I have my final Herceptin this week and will be so glad when it's over. I was told that it will take about 2 months before it is completely out of my system. I haven't been able to wear a ring since before starting on the year's Herceptin and started Arimidex 8 months ago. My fingers are so swollen that my rings won't go past the knuckles. I'm hoping that Herceptin will be the culprit for the swelling but if it doesn't go down I'll have to accept that it's the Arimidex and live with it. I guess giving up wearing rings is more important for my health. lol
0 -
Hi Fitz
Just wanted to say congrats on finishing Herceptin. My last (18th) tx will be on May 11th. I'll be glad when its over, if not a little anxious about losing the security blanket. Can anyone chime in with how we our likely to feel once treatment ends: physically and emotionally.
Ive had issues with heart palps evebarry but my last echo was 59 so i feel reassured.My onco will do a final echo after I complete tx. I do understand your fears. What did you decide about your fourth tx?
Liz
0 -
I went ahead with the fourth Herceptin infusion this morning. The nurse oncologist was surprised my oncologist encouraged me to proceed after the echo showed it had dropped 15 pts. She said heart problems usually happens early on. I feel in my gut that this morning infusion was the last one. In 3 weeks I will have another echo. If it drops below 50 (which it is right now where I'm at) I will be off Herceptin for 3 months. If my heart doesn't improve I'm off it for good. For me, unless I am again dx with cancer, I'm done with it. It seems that if the HER2+++ cancel cell was going to show it's ugly face it would do so by time the 3 months being off Herceptin.
The oncologist nurse this morning also said that sometimes just a few Herceptin does the trick in that our body (immune system) kicks in and does the rest. I'm hoping this will be true for me.
I feel relieved that the whole Herceptin infusion might behind me. I have gain about 10 pounds, thinner hair, and I hate feeling drained of energy most of the time. I'm looking forward to getting back in several weeks to my old self and enjoying the summer. For now, I'm going to stop dwelling on it and move on for a few weeks, and if the echo shows my EF has dropped, I'm going to do what I can to move on without Herceptin.
It is a great life saving medicine for those of you who can take it.
0 -
I have not had Herceptin since march 6 th when I was rushed to the er with a heart rate of 220. My heart was litteraly jumping out of my chest. That same week, I had a MUGA and my EF was 50. My onc decided to hold Herceptin for four weeks and do another MUGA then. ( I only had ten small doses with my weekly Taxol)
Jump ahead four weeks and I had another MUGA. My EF was now 37%. Crazy low! So, still no Herceptin and another MUGA scheduled for may 15th. My onc says if my EF improves at all, they will admit me to the hospital and give Herceptin one more try. If I can't take it then we will move on to clinical trials.
I've pretty much accepted the fact that I won't be able to take it and have been told the small amount that I have received is not enough to matter. Has anyone else been told this same thing? If so, what did you do?0 -
I've received 18 total doses of herceptin so far (12 with Taxol and AC before that). My EF dropped to 55-60% in March and repeated the beginning of April with a drop to 48%. My onc then decided to hold the Herceptin until May 14. A repeat echo this past Saturday showed it was up to 50-53%. I'm waiting to hear what the onc will decide to do next. My cardiologist said there are no studies showing the impact on the heart with adriamycin and herceptin given together as treatment (although in separate dosings). He thinks some of the damage might have been from the adriamycin too. I'm not sure what to think - Risk the chance of recurrence or risk the chance of permanent heart damage? I'm grateful for this board and to know that there are others dealing with the same thing. It's so frustrating!!
0 -
Besides feeling like my heart is going to jump out of my chest, I feel so chilled that I can't seem to get warm. I had the herceptin infusion this morning. I'm dead tired so I'm doing nothing today, but chillen out. I haven't felt this cold after the other infusions. There are things I need to do, but instead I am wrapped up in a blanket with my laptop.
Julie, my oncologist said before I took herceptin that she hasn't had a patient taking herceptin alone that had notiable side effects or problems with the heart. I had problems after my first infusion. I can't imagine the problems I would have had if I had chemo with the herceptin. I read somewhere recently, must find the study or article, that there are more bc women than they expected, who took herceptin who are have had heart problems.
So where do we go if we are dx again with breast cancer or mets? I know there are good alternative therapies for bc cancer...but what about the Her2+++ cancers? After getting over side effects of todays infusion, my goal is to try to get back to normal. If, hopefully not, I'll think about what's next ...maybe there will be a new target therapy that won't be toxic to the heart or lungs.
0 -
That would be great Eva but unfortunately so far all the her2 drugs seem to have the same se's. I had four rounds of AC and a MUGA to follow in January. My EF was 60 then. I didn't notice any problems until my 5 th tx of TH. I had the racing heart then but my onc thought it could be from the steroids or the zofran they gave me before my chemo...so they reduced those and still no luck.
Julie..let me know what your results are..I'm interested in hearing0 -
My next MUGA is tomorrow. I hope I won't have problems, I already have a pacemaker. I don't know just how that will factor to this whole thing. I finished my 4th tx, and feeling pretty good, but worried much love to all.
0 -
Best of luck Moon!
0 -
Best of luck Moon from me too!!!
0 -
Hello Ladies, I've been on Herceptin since 11/4/11 and so far have not had a problem with it. I know the study of 9 week course of herceptin in Finland has been mentioned before, because this site is where I heard about it, but just in case some have missed it I wanted to share it again. Kdking was told that the small amount she received was not enough to matter. Not everyone would agree with that. Here is the information that was shared with me on this:
http://www.ncbi.nlm.nih.gov/pubmed/21299447
http://www.cancer.gov/aboutnci/ncicancerbulletin/archive/2006/022806/page2
More studies are ongoing about the shorter course of herceptin, so the jury is still out, but it gives hope to those who have to stop early that they got enough to matter.
0 -
kdking, one thing for sure I know mine isn't from anything but Herceptin as I'm not even taking pre meds anymore...just Herceptin. My opinion is some doctors just want to keep us in treatment blaming our racing heart or other palpitations on something beside the infusion drugs. I'm glad they check our EF. My new cardio specialist said originally that pvc's are normal. I never had them before. I know for me the pvc's are abnormal. The last appointment he did say he felt what I'm experiencing is due to Herceptin. So if you feel something doesn't feel right push to find answers before it's too late.
Grandma V... yes, thanks for the links. Interesting! I wonder how many infusions the cancer patients in nine weeks? Once a week or three infusions every three weeks. If this is the case, I am well covered
0 -
Thank you for the link GrandmaV.. Very interesting and reassuring.. I had no problems until my 12th treatment (very minor problems prior slight heart palpitations) Have now had heart palpitations since last treatment and Muga scan showed a 11% drop in EF to 50%
0 -
My herceptin has been stopped for the last month due to my ejection fraction on echo dropping to 48%. A week ago it had risen to 50-53%. I'm scheduled to restart herceptin again on Monday, 5/14. Has anyone ever had to stop it, then restart it, and THEN stop it again? If so, were you ever able to finish the complete treatment? I've had 18 of 52 treatments so far.
My joint pain has also disappeared in this time off - It will be interesting to see if that's the SEs from Taxol going away or the herceptin. Fingers crossed it's the Taxol that was causing the problems!
0
