Herceptin - Quick Side Effects Poll
Comments
-
And here I thought that the aching feet and swollen/sore joints were just old age!! Going for TX #14 next week - am hoping, as you all are, that after the last tx is done everything rights itself.
I do have one question, though...Have any of you experienced cold-like symptoms post-tx, like about a week to two weeks after? Last week, I had a terribly runny nose for about 3 days, and felt like I had a bad cold. Then today I wake up and feel almost normal. Seems to me this happened after 2 other treatments. Anybody else experience anything similar?
0 -
1marmalade1 I have heard lots of folks complain of a runny nose on herceptin… you're not crazy although I have not experienced it myself.
0 -
I had a terrible runny nose and watering eyes while on TCH, now with just Herceptin, my nose just gets a little runny. When I met with my onc last week and told her how bad my aches were, especially on my feet, she said she never heard anyone complain of that before. Believe me, I let her know there are a whole bunch of us that are dealing with it! She said to take B6 vits, 50 mg. 3x's/day. Feet are feeling better, but all my other joints are still hurting. I guess it's the price we pay for this amazing Herceptin...just stinks though.
0 -
thegood - I think the joint pain is SO prevalent!! I would really like to know what the mechanism is - ie how the herceptin is causing it.0
-
I had lots of neck and back pain while on Herceptin, but I thought it might be due to chemopause. Once I resume my menstrual cycle the back pain disappeared. But the two--ending H and beginning my menstrual cycle--coincided, so who knows which one was the culprit.
0 -
Have had 14 Herceptins with 4 to go. Within two days of it feel like I have flu, nose runs non stop and my joints ache. My worry today is I woke up with a black eye ! I've had a mild headache over that eye for a few weeks and in the night I did notice it felt worse. My vision is ok. I've had other bruises on my body but hoped to avoid my face especially as I am going to a wedding soon. Oh well will just have to buy some very expensive designer sunglasses !
0 -
OK - so it wasn't my imagination, either. This is the 2nd or 3rd time I've had these flu-like symptoms after a Herceptin tx, although it usually doesn't happen until about 7-10 days after. Hopefully this means the H is doing its work!
0 -
Oh, Ladies, I am so sorry that you, too, have these issues with Herceptin, but it is so gratifying to know that all my aches and pains aren't just in my head. Today I feel like I've been hit by a truck and this morning I have to go for Herceptin #15, When I try to have any semblance of a normal life and do normal activities all in the same day like work, shop, clean the house, BOOM, I get slammed with pain. But I don't have a black eye...WOW, Ado, that's just awful.
0 -
Bon - Only 2 more herceptins after this one - yay!!0
-
Omaz...yes, after this only 2 more. And that is a blessing and a curse. While I am getting the Herceptin I feel like something is actively being done to keep cancer at bay. And after that, then what? I have a love/hate with all the treatments thus far. But onward and upward!
0 -
I had my last Herceptin 12/15/10 - so today is just over 4 months out. I noticed by about March the big joint aches were gone - yea! Still have mild finger stiffness, but nothing like it was during the Herceptin. I want to also mention that I had the ooph so some of the lingering stiffness could be because of that. At least I don't feel like 100 anymore!
0 -
Stlcardsfan...thank you for giving me hope. I had what I think is Herceptin #15 today (the nurse thinks it was #14) and I am just getting more stiff and stooped over every week. I think I have 2 more Herceptin IV's to go ( maybe 3) so I will be done in early or late June depending on the count. If it takes 4 months to stand up straight and be rid of most of the stiffness and pain, then November is MY month to celebrate. Looking forward to moving from Point A to Point B without wincing and stopping to reposition and rest!
Hugs to all and best wishes to all who celebrate Passover or Easter this week.0 -
Thanks stlcardsfan, that's good to know. I hope to be feeling better then by Christmas!0
-
Omaz and Bon - Best of luck. I do remember how I felt as each Herceptin past, and I remember my countdown to done. I kept saying to myself these aches will go away. It does seem that the more walking that I did, the better that I felt. In fact toward the end of each 21 day H cycle, the aches would almost be gone, and then I would go in for another one, and back they came. I did a lot of treadmill walking inside - and still do the walking to help keep the cardio part up. I also noticed my stamina increased about two months out from the last H.
Keep up the fight!
0 -
Spoke to Onc about black eye she is not concerned so I decided to ignore it and went to the gym. After 15 minutes of Spinning my nose started bleeding and I had to quit. Other eye lid now darkened but not as noticeable as the first one. I also have the mid finger stiffness and other aches but am determined not to get fed up. Thank goodness I am here enjoying this lovely Spring. This time last year was awful. I've noticed that those who for some reason didn't feel able to support me last year even with a card or e mail are now crawling out of the woodwork when it is nearly done. You certainly find pout who your friends are .
0 -
Ado - Are you platelet levels ok?0
-
Ado--Geez--do you think you should put in another call to your onc or your primary?? Definitely get those platelets checked. That's just not right. That doesn't sound like a Herceptin thing. Let us know how you are.
0 -
Ado...I'm with Tina...it seems like your platelets are messed up. My 89 yo Mom, God bless her, has a platlet condtion that leaves her with so many large bruises that the physician's office workers always ask if anyone is abusing her. I'm sure your doc is up to snuff and aware of all your issues. I have lost faith in my med onc. When I asked him about the nails splitting vertically he told me to see a dermatologist. WHAT? I know he is technically adept, just not personable. He is an enormous disappointment in an otherwise fantastic medical team. My BS and rads onc are stellar. Couldn't be better at explaining and follow up and empathy. But the one person who I have to keep in contact with and who is following me long term, the Med Onc, is just cold and not at all in tune with the issues. Just the $. Sad. When my insurance had a glitch his office wanted to charge me 120% of the medicare rate which is a good amount more than insurance was paying. Why? Because they charge all patients without insurance MORE! That seems criminal to me. Who says we don't need health care reform?
0 -
I have had 7 of my herceotin and my joint pain is very bad, especially in my hands. In the morning I can barely make a fist and ope again. With movement and warming up it improves. Also my shudders and hips are quite bad. All makes for pretty poor sleeping which only seems to compound the pain. I am worried about how much worse it will get as I am on herceptin until Dec! Of course none of my doctors seem to believe it is fro. The herceptin. They just don't want to believe herceptin has side effects . Lol
0 -
Thanks everyone it is so great to see your messages of support and concern. My eye is better today and the other one didn't develop into much. I do have faith in my Onc she is great but I am having a blood test tomorrow with my local GP. The Onc says she's had patients on H who have had bruising on the face and on the eye lid. I feel I've had a bad reaction this time what with the runny nose and aches and pains. Disappointing as just when you think you've turned the corner you realise it is not over yet. Thanks again everyone. I do wonder what I would have done without sites like this. Have a good break.
0 -
I have a funny feeling that the joint pain has more to do with what else we're taking internally - for example, Arimidex. I was just fine up until the time I started taking it just over a year ago. I can't wear any of my rings, as my knuckles are twice the size they once were. Sometimes I hobble down the stairs in the mornings because of the stiffness and achiness in my feet.
I started Arimidex a month after my first Herceptin, and I have had 3 month breaks in my Herceptin schedule over the past year. The swelling and joint pain did not subside during this time. My money's on the Arimidex being the problem(although I know not all of us take it, but take other forms of orals).
0 -
Good morning! Marmalade...I am not taking any adjunct therapy such as Tamoxifen or Arimidex. Only Herceptin. and my money stays on Herceptin as the root cause of the joint aches and stiffness. They did note during the bone scan that I have pretty significant arthritis in multiple joints so perhaps Herceptin aggravates arthritis.
Whatever is going on, it's real and discouraging since it really does interfere with having a truly normal life. I have tried to walk for exercise and just hit a wall of pain that then requires aspirin, a heating pad and bed. If I work and grocery shop in one day, that's about all the physical activity I can take. And that requires the aspirin, heating pad and bed, too. On Monday of this week I felt pretty chipper so I went grocery shopping and then stopped at Target, the shoe repair, the drug store and pumped gas. I tried to go into a department store to look for new shoes but got halfway through the store and couldn't take another step. I sat down to pretend to try on shoes and after a few minutes regained enough mobility to hobble out to my car and then home to bed...with the heating pad and aspirin bottle. All the walking I did between and in stores and parking lots just did me in. Now that shouldn't be. I can't even enjoy retail therapy! It's humiliating!
0 -
Hi I finished chemotherapy and had a mastectomy - started herceptin in December and I go every three weeks. My nails have also become thin and split or break easily. The runny nose is constant, usually for the first week after treatment. I also noticed thinning of eyebrows and lashes ( both had grown back nicely once I was done my chemotherapy). One thing that I have just started to experience in the last two to three weeks is that my hands (fingers mainly) swell up at night and it takes a while for them to go to normal size once I am out and about. My surgery was on my right side so don't understand why my fingers on both hands swell. Has anyone else experienced this while on Herceptin?
0 -
Hi - just read your post my fingers swell up and I also cannot make a fist, it always happens in the middle of the night and I wake up from the discomfort of it. It seems to be getting worse. Have you found anything that helps?
0 -
This is a little off point, but they were doing my herceptin infusion (every 3 weeks) in 30 minutes. I asked to slow it to 90 minutes and that helped some with the SEs. Also this time I asked them to reconstitute the herceptin with regular sterile water (20ml) instead of the normal bacteriostatic water which contains benzyl alcohol (after they reconstitue it then they add it to the saline). The instructions for herceptin say that you should do this if you are sensitive to benzyl alcohol but how would I know that? Anyway, I don't know if they really used sterile water instead of bacteriostatic water but it seems like I feel less 'sick' this time with the herceptin.
ReconstitutionReconstitute each 440 mg vial of Herceptin with 20 mL of Bacteriostatic Water for Injection (BWFI), USP, containing 1.1% benzyl alcohol as a preservative to yield a multi-dose solution containing 21 mg/mL trastuzumab. In patients with known hypersensitivity to benzyl alcohol, reconstitute with 20 mL of Sterile Water for Injection (SWFI) without preservative to yield a single use solution.
0 -
chloe I still have fluid retention problems. I think its from the Anastrozole (generic Arimidex) but my NP thinks its left over from chemo. I'm on a very low dose diuretic. They took me off it and I gained 5+ lbs in 2 days and felt terrible. The diuretic dosn't get rid of all of the fluid retention but it makes a significant difference. I don't feel its from Herceptin.
I had muscle stiffness on chemo but no joint pain. I still have no joint pain (can be a SE of Als) and my muscle stiffness is now gone. I did have low D diagnosis 1.5 years ago AND was diagnosed with osteopenia by my onc before chemo started. I'm taking:
• calcium 1200
• Vitamin D 400 IU (included in calcium)
• Vitamin D 400 IU (included in multivitamin)
• Vitamin D3 1000 IUI have a feeling this is why I'm not getting the joint pain.
0 -
Bon I agree this aching is definitely Herceptin.
Chloe isn't it weird that the fingers are bad. My mastectomy was left side my bad fingers are on the right which is of course where they put the Herceptin in. I also developed a frozen shoulder on that side again the Onc puts it down to Herceptin. It was so painful and although less so now the movement is still restricted. With the fingers stiff and aching I cannot carry heavy bags as I suffer not so much at the time but during the night and the next morning.Won't it be great to get this over with. I'm going to the gym tomorrow to see if I can do the Spinning. I hope so as it has really helped my weight loss and makes me feel good.
0 -
I have an old stationary bike that I will drag in on Sunday night afer everyone has gone. I am hoping I can use that to get some exercise. It won't exactly be spinning...but it's better than nothing, right!
Don't know where all these aches, pains and stiffness comes from but I am sick of it. Enough already !0 -
I am on the same supplements as Lago except my Vit D is 50,000 once a week. When they ran the D3 test my reading was 17. Maybe I can use some sunlight too. I am not experiencing any pain from the Herceptin. I get it weekly between the TCH treatments. I have had 13 treatments so far.
0 -
I get the achy joints, esp. my knees and the runny nose. I also get headaches the week after tx. I've only had 7 so far, so have a long way to go. I do also have fingers swelling overnight, but only on my left side, the cancer side, so I thought it might be like pre-LE, as opposed to Herceptin related. The fingers on my other hand do not swell. I just got home from Rads and should be going for a walk, but can't motivate myself too right now. Even though I know its going to rain tomorrow so I should go today. Herceptin also seems to put me in a bad mood, esp. the week after.
0
