Oncs trivialize side effects: the 2 big ones

[al from Canada]

The whole process of treatment is quite de-humanizing. I'm pissed that the oncs have very little regard for the two biggest hits a women takes when she starts chemo:
1. wieght gain and
2. lack of libido.
This is mentioned so matter-of-factly that it is demeaning and insulting to say that we will destroy 2 out of the 3 most important things in your identity and not offer solutions. Welcome to the world were Q of L is messured by diarriah, vigilance, cognitive function and lets not forget your level of anxiety and if you need ativan.

It's time to deal with these ego-crushers one at a time.

Start with weight gain, because that was in the most recent post.

As far as I know, for weight loss, calories in must not exceed calories out. Other factors such a hormonal shut down and thyriod aptrophy make play a part. (if you are on dex or pred, sorry, there is no solution untill you stop.)

Lets identify the whys and maybe some of you can offer solutions.

Al

[sarah]

Dear Al,
Thanks for you post. I gained 15 lbs during chemo and have never really lost it and it is annoying.
What a great photo of you both.
You are so strong and you and Linda were such positive influences and brave and you are still, so inspiring.
we send love and our gratefulness to you.
Sarah

[tousled1]

I guess I'm one of the lucky ones as I did not gain weight during my chemo treatment. As a matter of fact, I lost weight! I was also very fortunate that my side effects were minimal. No nauseau, no dirreahea -- the worst side effect was the neuropathy while on the taxatore (decadron pre-med).

[DeborahNC]

I have gained weight since chem/Herceptin began on Nov.4 2005. I'm eating far less and far healthier as well.

Starvation dieting isn't an option as I've so little energy to spare due to chemo induced anemia that is proving difficult to reverse.

Any ideas as to how to solve this would be warmly welcomed.

[al from Canada]

neupogen or neulasta maky be an option if your neuts and CBC is low.

Al

[Monique M]

Weight gain (10 pounds) with the taxol was an issue for me also. Fortunately, I have since lost the weight (Note I have been done with chemo for over a year and it took time). I think we also need to focus on the bigger issue-- eating a diet that will increase our survival. After I stopped chemo I was pretty good about staying with a way of eating similar to the Breast Cancer diet which was mentioned recently in another thread. I recognize, however, that I have dropped back into my old eating habits so I am once again conscious of what I need to do. While I love fruits and vegetables, one of my biggest problems in this area is finding recipes that incorporate the guidelines of the breast cancer diet. A variety of recipes would go a long way (at least for me) in keeping me interested in following the plan.

Is anyone else interested in designating a place where recipes can be posted and shared (Joe-- is this even possible?). I like to cook and have my regular recipe sites but I feel I could learn much more from everyone on this site who has similar goals and is at war with this disease.

Peace and Blessings!
Monique

PS-- Al I love the picture of you and Linda-- a beautiful couple! You and your family continue to be in our thoughts and prayers.

[suzan w]

Thank you, Al, for this post! These 2 subjects are ones I have questioned my onc. about. Although she is a terrific "doctor" and really knows her stuff, and fights for what is best for her patients, she does not HAVE breast cancer and cannot identify with symptoms that are not in the "manual". That is why support groups like this are so important...real people...real problems!! And, even though there may not be easy solutions, at least it makes me feel like I am not nuts when I mention weight gain-10 lbs since chemo...and loss of libido!

Now that I think about it...starting 2 years before I was diagnosed, I put on 10 lbs. over the course of a year. I have a small frame and was always at the low end of the ideal weight chart, so didn't pay too much attention to the 10 lbs. However...most of the weight went to by breasts, which went from a 32-A to a 34-C. The rest of my body didn't change much...I was also taking hormone replacements which I feel are implicated in my ER+ breast cancer. Just a few thoughts...!!

[al from Canada]

Susan,

They say that hind-sight is 20/20 which I don't neccessarily agree with but, I think intuition is just as powerfull as any stats we read about and your comment about breast size may just be the bit of info that makes the light go on in someone elses head. Now weather the enlargement contributed or it was the cancer, attracting the E to the breast area; doesn't matter, it's the connection that may count.
Thanks for sharing,
Al

[AlaskaAngel]

This is just one message I've received from another patient, but it is genuine, and I offer it as food for thought. The issue of loss of sexuality is invisible most of the time and because of that it gets lost in the shuffle of treatment. I think it is tragic if we cannot find ways to productively do a better job of offering more realistic options to people who suffer enough from a cancer diagnosis as it is:

"During one of the chats we began discussing sex. Well, one woman recommended cocoanut oil--boy is that a good suggestion--and then you brought up the topic of smoking and whether that might influence the sex drive as it did when we were kids?

I finally got a sample. Well, smoking allowed me and my husband to have sex for the first time since diagnosis. (over 2 years) He has a lot of problems sexually and if I don't make a real effort, then he can't. And I have felt like it before. If I do make an effort--and I did--yesterday--then we can have a lot of fun. So thanks. Don't know if I will ever get more, but it sure was fun while it lasted."

[janet/FL]

Hi Angel
I know you have participated in a trial using testastrone. Did that not help?
Has anyone else talked with their doctor regarding sex and cancer?
I will answer in part my own question. I did talk with my gynocological oncologist. I mentioned on the paper they had me fill out that I great problems in this area that I didn't know if they were solveable. He didn't address it and falied to give me a perscription of Vagifem--which he had in the past and seemed to work quite well for vaginal dryness. And I failed to ask further. Next month at my regular appointment, I will talk with him about sex and cancer.

[AlaskaAngel]

Yes, I participated in the NCI trial for use of low dose testosterone by bc patients. I have asked for the results but haven't received them yet (trial was done in 2004). I cannot say definitively that it made a difference, but that may be because the trial was limited to one month's use only and the testosterone was specifically not to be used in the genital area. In all the other discussions among both cancer patients and noncancer patients that I've seen, including the TV presentation on Oprah about this, the testosterone was genitally applied and I think that probably does make a major difference in outcome. I do not know if that means there was a bias that affected the outcome.

IMHO, there is a distinction between libido and sensuality/sexuality. Libido is the broader sense of joy of living; sexuality is just one type of libido. Treatment affects libido.

There is a phase III clinical trial that is being done for a drug that may improve libido and by coincidence is also a SERM, which is interesting. Was it discussed at SABCS? It was mentioned at one point by one of the reputable cancer centers.

I do want to add more commentary that I received from the lady who sent me the comments yesterday:

"I finally got a small sample of marijauna from someone who knew I had breast cancer. My DH and I were excited to try it as we have not had relations since diagnois and that was over two years ago. I could just not get in the mood. Well, we did try once, but it was so painful I didn't want to do so again.
To complicate the problem, my husband has some sexual issues that even viagra doesn't solve totally. I need to be in the mood for it to work for him!
Well, smoking, a little bit of brandy and some cocoanut oil put us in the mood. Lots of fun. Some pain, but, I think mainly I lost my inhibitions and fear of pain and just was enjoying it as was he.
Definitely worth a try, if possible. Sex is one of God's gift to us. And with all we go through, we sure can use all the gifts we have. Can't believe it can't be given to us, even by prescription."

[janet/FL]

Angel
Prior to breast cancer, when my endocrinologist supplied me with testoastrone, his directions were to put it on my arm. He had to rapidly reduce the dose because it was too strong. But it worked. I felt like a 17 year old boy probably feels! So, I don't know if one could just use a lower dose in the genital area, if that would help.
The doctor expressed no desire to put me on teststorne following the BC diagnois and said that some women might even want to sue him under the circumstances. So no testosterone until the results of the study you were in--at least!

Now if marijauna were legal, I would think that would be worth a try. It was recommended to me by one of my bc nursing staff for many of the common problems of bc patients. Nausa, anxiety as well as the possibility of feeling normal sexually. Unfortunatelly, the nurse couldn't write me a prescription! :-(
Dr. Andrew Weil is hoping that it will soon be legalized as a plant that has many uses, both as rope, food, and medicinal. A good money making crop that is not utilized in the USA.

[Mary Anne in TX]

Hi To All!
Suzan, I too gained a couple of sizes in my breasts a couple of years before diagnosis also! My hair went from very straight to wavy. Loved both and then WHAM!!!!!! Oh, the blindness of pride! Love to all, ma