Herceptin, wine and other stuff...

[Louise O'Brien]

A silly question, I know. Maybe several silly questions.

A bit of background first.
I don't drink hard liquor but have always enjoyed a glass or two of wine with dinner. I stopped that during my chemo treatments, except for one or two during the Christmas season. I finished chemo on Feb. 28 (Halleluia!!!) and had my first Herceptin three weeks ago. It was the loading dose and I had the predictable chills and fever that rose to 101 degrees. My husband was about to take me to the hospital when the fever slowly started to go down - and by noon the next day - I was back to my old self.

Question Number One:
I have a second treatment this week. It's much shorter - and I'm wondering if I'll have the same reaction.

Question Number Two:
My hair is starting to grow back - but it's coming back white. Really white. I did not have white hair before - a bit of salt and pepper - so this is interesting. It looks like a buzz cut right now and if it were coloured, I might be able to ditch the wig and go baseball hats, but that white makes it look almost invisible. Anyone else experience anything like this?

And finally - to the wine.
No sooner did chemo end then I faced another challenge - the death of my sister. She had been terminally ill for several years and her care was a challenge as she wasn't the easiest person to deal with. It was five years of incredible stress. I am now been faced with the cleanout of her apartment (she was a pack rat and we had no idea where anything was) and executor's duties. So it has been incredibly exhausting and stressful and I haven't had the rest I had hoped to have after chemo.

So there is nothing I would enjoy more now than a glass of wine. I'm not talking about guzzling a few glasses every day and I'm aware alcohol is to be avoided during treatment. It's only during week three when I've had a glass or two and I don't do it every day - perhaps twice in a week.

But am I harming myself? I don't want to do anything that would interfere with treatment. I still have a year to go and I want to do it right - but I also want to enjoy life. I like to cook and I enjoy eating out and I love sipping some good wine.

[Audrey]

Hi Louise, I don't think there is anything wrong with a glass or two of wine with your dinner now that you're finished with chemo. I certainly drank wine during the year I had Herceptin treatments--my onc. said everything IN MODERATION was okay. A glass of red wine is even supposed to be good for you now, right? Check with your onc. first, to be sure, but I say go ahead and enjoy a glass of wine after all you've been through! Regarding your reaction to your first dose of Herceptin, I think this is normal and the second and subsequent doses should be fine. Your nurses will watch you closely to see if you're having any unusual reaction, but I think that usually just happens with the first dose. I had a similar experience with my first Taxol..

Louise,

Like you I never drank hard liquor, only wine, and not very often. I believe drinking wine is fine although since it is dehydrating, I wouldn't drink it the day before your infusion, or the day of, or after. However, and this is a big however. I wonder if you'll actually like wine while on herceptin. The same wine I used to like, Kendall Jackson for example, tastes awful--I am more than six months off chemo so it can't be that. It has a bitter taste. Even the very best French champagnes don't taste good. It takes me more than an hour to finish a three ounce glass these days and most times I spill it into the sink and go back to drinking tea, or water.

[Becky]

I drank wine during Herceptin - my treatments were on Fridays (triple dose) and sometimes (closer to the end and I had 16 months of Herceptin) I would drink on that particular Friday. I tried not to but at the end of those 16 months, I was already a 2 yr survivor. I did not drink at all during chemo. I felt my liver was going through enough turmoil and I didn't during rads either but I started Herceptin after rads (2 months afterwards) so I was starting to feel fine by then.


I felt exactly the same way you did with the loading dose. The second dose I had a bad headache (as with the next couple of doses) and then it was like nothing (except a runny nose).

So, don't worry - you have to live (after all - this is why we took all those treatments anyways).

As for your hair, the same thing happened to me with the color. I dyed it brown and now, the roots only have alittle grey in them like they did before I got cancer.

Becky--does it taste okay? Wine has such a sour taste these days. I like good wine and I really want to enjoy the taste again some day, and I fear it's ruined for me. I used to like salmon too and can't bear the smell or taste any more.

[Patb]

Hi all

I am taking Herceptin now after chemo and rads and I have a glass of wine with
dinner, just not the day before and after treatment. The wine taste fine but I
never had a problem with taste and never missed a meal so everyone is different. I ask the nurse and Dr. and they said of course.
patb

[Becky]

I was going to do a PS on the taste - unfortunately it tastes just fine. Maybe its because you are closer to chemo and chemo did affect my taste buds quite a bit.

[Emelie]

Hi All,I have been enjoying a glass of wine since I finished chemo, and it tastes GREAT! Is it ok to have that wonderful glass during radiation? I do have a question about eyelashes. Mine have come in thick and curly? They are very weird looking. They don't get very long and they curl under. Any one else experience this? For the hair, mine is almost white on top and very salt and pepper on the sides and back. It does look very sparse on top because it is so white, but frankly, I am so glad to have hair I don't care anymore.
If anyone has had the weird eyelashes, please let me know.
Emelie

[CPA]

Did you get benadryl/tylenol with your first dose of Herceptin? If not, you might want to ask about it to help eliminate any allergic type reaction.

[lu ann]

Dear Louise,

My advice is not about alcohol, but is about your task of cleaning out your sisters apartment. It might look like a bunch of junk that you just want to get rid of, but there might be some real treasures mixed with the junk. If at all possible why don't you pack everything in boxes and put them in a storage unit. You will be able to tackle the project when you feel up to it and you won't throw anything out that is important.

From my own experience it is much harder dealing with the death of someone that was hard to live with. Sometimes they become a saint and you are left with all this guilt that you really don't deserve.

It is my biggest worry that my well intentioned sister, mother in-law, and 2 sister in-laws, will come over and start pitching everything out. I have three daughters that I want to have my things, but I know I won't have time even if I live 20 more years to go through everything I own.

I have all their baby clothes and all their toys organized for my grandkids. I have over 10,000 pictures most of which are in albums and many that havn't been developed. I have about 200 hours of video that I have been editing on my computer and transfered to DVD's. I have some that I am going to send to funniest home videos. They are atleast good enough for honerable mention if not a cash prize. I have a 4 drawer file cabinet where I stored all their important papers. They each have their own drawer. I did pitch out the other stuff that did not fit. I always wanted to make them a scrap book.

As you can see, I kept too much stuff. When my mom died, my dad remarried 6 weeks later to his brothers widow. My sister and I were not alloud to go through our moms things. My aunt/stepmother went through all my moms things. When my dad died 9 years later, she had him creamated and then she got everthing. We were left out of the will.

I was diagnosed with my origional breast cancer 6 weeks after my dad died and did not concern myself with his things until much later. My sister and I were SCR---D out of everything again, big time. I try not to dwell on what was done or the things I didn't get. God knows I have too much stuff. But I don't want it to happen again to my kids. I think my sister would do harm to my husband if he let another woman do this to the girls.

I have three jewelry boxes that were gifts to me that each of my girls get with the things inside that they picked out 3 years ago. I have antique furniture, china, crystal, and other items that they have told me they want. My husband is a good man and I trust him to do what is right by them.

I will end with some advice for those of you, like me, that have hung on to too much stuff. Start going through things a little at a time so noone else has the burdon of deciding what to do with your possesions when you die.

Owning too much stuff can really be a burdon, not only to yourself, but those you leave behind to clean up the mess.

Take care and good luck.

[StephN]

I have the pleasure of a Frenchman for a husband. Wine is considered just another "food group" in that country. During my chemo I had to adjust what I had as my taste buds were "off" like some of you have mentioned.

The wines that worked best for me were the low alcohol German wines, Loire Valley wines as in Vouvray and light reds such as Beaujolais or Saumur. Nothing very acidic or oaky would work for me in those months. A white wine KIR (with Cassis added) was quite tolerable as well as some Rose styles (not sweeet). Domestic wines were just TOO unbalanced.

My med onc had no trouble with me having wine with dinner during all my treatments and my rad onc said the same thing. They knew I would only drink good quality anyway. I never skipped any days I felt like having the wine because it was treatment, even during my big invasion of liver mets. Just drank more water or herb teas. I think having a little wine took the edge off some of the side effects and helped me fall asleep at times.

Wine has continued to be part of my dinner menu and I am now over six years out from diagnosis to mention this.

P.S. Going through someone else's stuff has been hard, but the times I had to do it things had been weeded out and left in pretty good order. Trying to be at all organized while fighting cancer is one of the hardest of my challenges.

[DonnaD]

Louise,
I am not an authority on this but you should do some research on line about alcohol. Google alcohol and breast cancer. An article just came out a few days ago. The thought is alcohol does increases ones chance of breast cancer. Does this relate to reoccurance as well? Have also heard that long term alcohol use increases estrogen production from the liver.

Both my primary physician and the director of the dietary study I am in says no more than one drink a day, and they would like much less than that. I have not talked to my onc about it.

I did enjoy wine, but do not do much these days. During chemo wine would burn the inside of my mouth. I am not saying you should be a tea drinker only but do look into it.

Donna

[Hopeful]

Donna, I followed the link you posted but could not find the story you were quoting?

Wine has been my hobby for 23 years; I drink it several times a week (though no longer every day) and have added a folate supplement to my diet, which is thought by some to offset the carcinogenic effects of alcohol. My doctors are aware of this and none of them advised me to do otherwise.

Cheers!

Hopeful

[sassy]

My surgeon actually suggest a glass of red wine would be good for me daily. This was after chemo and rads, during Herceptin. I had several other problems during Herceptin (infections, etc) so maybe he felt it would be helpful for these various problems.
________
Medical Marijuana Valley Patients Group

[DonnaD]

Hopeful
I am sorry, I can not find it on the website now either. Go to Google, put in alcohol and breast cancer and it should come up.

[Jeanette]

I am almost two years out and have my wine every night. It is something I enjoy and my onc's have not said I should not take it. every thing in moderation though. Life does go on, regardless of whatever else goes on. Blessing s to all, Jeanette

[Louise O'Brien]

Thanks so much for all your comments. The one thing I do notice is that my body tells me whether I can tolerate something or not - and I pay attention. There are days when the last thing I want is a glass of wine - other days when it would be a pleasure. I never seem to want more than one glass - sometimes an ounce is enough.

I just finished my second Herceptin treatment and they gave me hell for not going to the hospital the first time. I had chills and shaking for about six hours following the first dose and they said that was extreme. They were also surprised that my reaction didn't happen until a few hours after I got home.

So instead of the shorter dose I was hoping for this time around - they started with half an hour of benedryl and cortisone, followed by a 90 minute infusion and then an hour of observation. They'll assess what to do for my third treatment. I was really looking forward to shorter treatments with Herceptin but now there is no guarantee.

It seems that with my last three treatments of taxotere and now Herceptin, I'm experiencing the worst side effects. The kind that only a minority of people get on the drugs - so that's a bit worrisome.

And I appreciate the advice on cleaning out my sister's apartment. Unfortunately, because I'm the executor I had no choice but to tackle it. It's almost over now - and I'm looking forward to sitting out on our deck this weekend because the weather is spectacular - and perhaps sipping a teeny glass of wine. Heaven!

[mamacze]

Dear Louise,
I vote for a glass of wine per day. Clearly the science is not rock solid on this; the wind seems to be leaning toward an occasional glass...and shoot, what would a girls night out be like without it? (we have to watch out for our mental health as well girls!!)
And LuAnn, my husband was just talking about "stuff" theother night. He is an estate planning attorney and says he spends his days advising clients to start giving their stuff away while they are alive and well and able to enjoy the act of giving. what good does it do collecting dust and giving us agada worrying about what will happen to it all if we pass; right? Just a thought.
Love Kim from CT

[Sheila]

Lu An and Kim ...and all the others

First on wine, my Dr recommends a glass of red wine a day...it helps me sleep therefore avoiding medication.
About going through things, I have been going through items for a while now, and when I do, I have 3 boxes for each of my children...all their report cards, pictures, baby outfits, cards from when they were born etc...special Christmas ornaments they remember as a child...when the boxes are filled, I deliver them to my kids, come home and start again. This way I know I have given them the things I saved for them, I am not trusting anyone else to do this. Another important thing is a will.....as morbid as it seems, it can save alot of heartache with family later on.....everything is spelled out.... This is extremely important if a spouse remarries, as in Lu Ann's Father s case....family heirlooms and important items can be distributed to the people they were intended to go to, without any hard feelings or second guesses later on.