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.

[al from Canada]

May 21 (foodconsumer.org) - Postmenupausal women who gain weight in adulthood face a higher lifetime risk of all types of breast cancer, particularly those most dangerous forms of the disease, according to a new study.

Published in the July 1, 2006 issue of Cancer, the study reveals that the greater the weight gain as an adult, the greater the risk for breast cancer of all types in terms of histological types, tumor stages, and grades, particularly advanced malignancies.

Women who gained over 60 pounds were up to three times more likely to have breast cancer spread than women with less weight gain, a finding that has not been reported before. This is in agreement with a previous finding that obesity increases risk of dying from breast cancer.

Breast cancer risk was about 70 percent higher in women with a weight gain of 21 to 40 pounds and 1.8 times greater in women who gained between 41 and 60 pounds.

Obesity has been well associated with breast cancer risk in previous studies, but there is no data on whether that risk is specific for the type of the disease.

The study, led by Heather Spencer Feigelson, Ph.D., M.P.H of the American Cancer Society, looked at the link between weight gain and type of invasive breast cancer among 44,161 postmenopausal women who were not taking hormone therapy.

The researchers found that the greater the weight gain, the greater the risk for all types, stages, and grades of breast cancer, especially for late-stage cancer or cancer that had spread to other parts of the body.

Compared to women who gained 20 pounds or less during adulthood, women who gained over 60 pounds were almost twice as likely to have ductal breast cancer and more than 1.5 times more likely to have lobular type breast cancer, according to the study.

The risk for metastatic breast cancer increased for all women who gained weight, with the risk greater than three-fold for women who gained over 60 pounds.

Weight gain is expected to increase the risk of estrogen receptor positive breast cancer only. But there are many other theories to explain the effect of weight gain on breast cancer.

According to the estrogen theory, with fat tissue the primary source of estrogen, the hormone levels in postmenopausal women are 50 to 100 percent higher among heavy women than lean women. Estrogen-sensitive tissues are therefore exposed to more estrogen stimulation in obese women, leading to a more rapid growth of estrogen-responsive breast cancer.

The effect of obesity on breast cancer risk depends on a woman's menopausal status. Obese postmenopausal women have 1.5 times the risk of women of a healthy weight compared to those with a healthy weight whereas obese women somehow have a lower risk of developing breast cancer, earlier studies found.

Obesity can also increase risk of death from breast cancer in postmenupausal women compared with lean women.

The distribution of body fat may also affect breast cancer risk, previous studies have found. Women with a large amount of abdominal fat have a greater breast cancer risk than those whose fat is distributed over the hips, buttocks, and lower extremities.

The current weight is not as important as a woman's weight gain from the age of 18, the researchers say.

"these data further illustrate the relationship between adult weight gain and breast cancer, and the importance of maintaining a healthy body weight through-out adulthood," Dr. Feigelson and colleagues conclude.

In the United States, 220,000 new cases of breast cancer are diagnosed each year. Among them, scientists estimate 41,000 new cases or about 11,000 to 18,000 deaths per year from breast cancer can be avoided if women maintain a healthy weight throughout their adult lives.

An estimated 64 percent of U.S. adults are either overweight or obese, according to the 1999-2000 National Health and Nutrition Examination Survey (NHANES). Obesity is believed to be responsible for 3.2 percent of all new beast cancer cases diagnosed each year.

Excess weight gain is also linked with many other types of cancers, according to earlier studies. It is estimated that 20 to 30 percent of cancer cases including breast cancer are associated with obesity.

Preventing weight gain can reduce the risk of many cancers including postmenopausal breast cancer, earlier studies have found. Experts recommend that people establish habits of healthy eating and physical acti

[Sandy H]

Al that is a good start but you can add the hair loss to your list. There are times when it is convenient just to flop a wig on and go but sure is a pain if one is camping, or traveling with others who have never seen us with no hair or don't even know we wear a wig!! As you know I am such a vain person and enjoy my nails and nice looking hair so I have made a collection of wigs. That is how I am dealing with hair loss. As for the two you mentioned well the weight gain I have not been able to figure it out. I do know I have to eat frequently to keep my strengh up and I don't like the weight gain but then I have other more important things to worry about. A great picture of you and Linda. I am still at a lost that our sister Linda is no longer with us. God bless you Al and I am so happy you are here to continue to support us. We need more men doing this. Sending you a big hug during this difficult time. Sandy

[AlaskaAngel]

Al, I can't say in words how much it means to have a man openly recognize how degrading it is to have these precious parts of us sacrificed without even an attempt at counseling for most of us, much less any actual serious investigation into ways to decrease these problems if at all possible while offering therapy.

For weight gain, I have seen postings from others noting that they refused the use of things like Decadron or asked for lowered doses, as a way of avoiding so much weight gain. I only WISH I would have been more aware of this option when I was doing chemo. I seriously question whether all of this that we get has been standardized for the all-around consideration of benefit vs detriment.

For libido, I think the best place to start is with thorough explanation with counseling PRIOR to and DURING any therapy. For me personally, with dx at age 50, I feel the chemopause effects on libido amounted to the equivalent of a partial lobotomy. I have no idea why doctors would think it is anything else. We already have SOME idea that hormonal balance may be part of the change with homosexuality, so why on earth would we think that such extreme hormonal change would not have a significant effect on the female personality and identity, along with the changes in energy level. We already know that women who are not worried about breast cancer TAKE added estrogen to "feel better".

I participated in the clinical trial for breast cancer patients to be given a low dose of testosterone to see if that would help with libido, because I felt that someone needs to learn more about natural hormonal balance. I think the outcome did not support the use of testosterone but I don't have the actual results and have requested them.

Thanks again for your empathy, Al.
AlaskaAngel

[Lani]

discussed all HISTOLOGICAL types of breast cancer (ie, infiltrating ductal vs inflammatory vs lobular vs medullary) rather than what are now felt to be the true subtypes of breast cancer (basal-type, her2-type, luminal A, luminal B and normal) based on Genes/proteins/biomarkers. Thus it is still possible that her2 breast cancer (as in article cited in my previous post) is not associated with obesity. As her2 testing gets better and more widespread we might get a better hold on this...

I posted two interesting articles --one on weight redistribution related to specific kinds of fats (I am sure RB will comment) and the other on weight loss related to an agent that affects PPAR. All are food for thought

[cherylynnie]

While in the oncologist office receiving treatments I really haven't noticed any obese people, so when I read this I am a bit puzzled. I guess the numbers come out to be 18% (41,000/220,000). And not everyone in the dr. office are breast cancer patients, so maybe it is unlikely that I wuold see any obese bc patients.

And I am or was premenopausal (39 yrs), it seems that this info is on postmenopausal women, so how does it apply to premenopausal women?

Now I will admit I have gained 30lbs. over the years, but according to my height and weight - bmi- that only puts me 5 pounds into the overweight category. But it seems its is how much weight you have gained as an adult that this study is siting. Will we really ever know why?

I had my kids early, and breast feed them, started my period at nearly 15, am not a drinker or smoker. So weight gain and non regular exercise are my calprits. Or are they? There are happy, jolly, overwieght women who are perfectly healthy.

Somehow I have figured this is what I have to go through, and hope one day I will find out the why, but am not going to find that out anytime soon. I am going to fight this and get through it as long as God allows me.

As to the libido, I feel very sorry for my husband. The onc. last told me that it was probably more psycological than physological. I am not sure which it is, but I know I have been through alot and sex is not something I think about, sleep is more important to me right now than anything, unfortunately.

[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

[Lani]

tibolone is not available in the US--there is a lot of literature on it (lipid profiles while on it, etc) as it is used for hormone replacement in Europe

FYI:

Maturitas. 2006 May 25; [Epub ahead of print] Related Articles, Links

Clitoral circulation in postmenopausal women with sexual dysfunction: A pilot randomized study with hormone therapy.

Nappi RE, Ferdeghini F, Sampaolo P, Vaccaro P, De Leonardis C, Albani F, Salonia A, Polatti F.

Research Center for Reproductive Medicine, University of Pavia, Italy; Department of Obstetric and Gynaecology, IRCCS Policlinico "San Matteo", University of Pavia, Piazzale Golgi 2, 27100 Pavia, Italy.

OBJECTIVE: The aim of the present pilot, randomized, study was to assess hemodynamic status of clitoral erectile tissues in postmenopausal women reporting female sexual dysfunction (FSD), namely libido and arousal disorders, under hormone therapy (HT). Vaginal health and sexual function were also investigated. STUDY DESIGN: Fifty patients presenting for clinical evaluation of menopausal status and suffering from FSD were randomly assigned to receive tibolone (2.5mg) or 1mg 17beta-estradiol .5mg NETA (EPT) for 6 months. The observational period lasted 7 months during which women underwent to duplex Doppler ultrasonography to obtain clitoral hemodynamic data, were evaluated by using the vaginal health score index (VHIS) and filled in the two-factor Italian McCoy female sexuality questionnaire (MFSQ). RESULTS: Tibolone significantly increased clitoral peak systolic and end diastolic velocity (p<.001 for both), while no significant difference was evident in clitoral circulation of women under EPT at the end of the study. Both tibolone and EPT significantly increased VHIS (p<.001), an effect already evident following 3 months of HT. The atrophic state was significantly improved at 6 months (p<.001) with no significant differences between the two HT regimens. After 3 months, both tibolone and EPT significantly increased the sexuality score (p<.001, for both), but such an effect was significantly more pronounced in FSD women treated with tibolone in comparison with those assuming EPT (p<.002). Between the 3rd and the 6th month, tibolone caused a further significant improvement of sexuality score (p<.001), while women under EPT did not show any significant further change displaying a lower score (p<.001) at the end of the study in comparison with women assuming tibolone. CONCLUSIONS: Clitoral circulation in postmenopausal women reporting FSD is significantly increased under tibolone in comparison with EPT with a better improvement of sexual function, as measured by MFSQ, following 6 months of treatment.

PMID: 16730929 [PubMed - as supplied by publisher]

[AlaskaAngel]

Use of estriol is also more common in Europe... thanks for the info about tibolone... there is also a trial for a vaginal treatment that is a SERM...

A.A.

[mamacze]

Al,
Once again you raise two very relevant topics.
I will "weigh in" and confess to adding 15 pounds. Also, since my total hysterectomy, I have been as dry as the sahara desert and of course, hormone replacement of any form is not an option. Counseling would be welcome on both fronts as both are problems that plague us daily. I wonder if the lack of discussion is due to the fact that the docs just aren't used to us ladies living as long as we are, now with Herceptin.
Thank you again Al for your insights.
Love Kim from CT

[al from Canada]

OK, I'm almost sorry I brought this up because after reading the study on clitoral circulation, (thanks Lani, we love you), all's I can say is wow..... and Kim, you may feel dry as the sahara but remember one thing, you look just as Hot as the sahara as well, all's you have to do is spread the word..
love, al

[Karen t]

From a friend who also had BC and was ER+/PR+/her2-, I learned about the Estring. The Estring is a small rubber or plastic ring that is inserted vaginally and delivers very small doses of estrogen to address the problem of being as dry as the Sahara. It works and my onc approves.

Coincidentally, I mentioned to my gyn that the Estring was also improving my incontinence problem. She referred me to a urologist who tested my output of urine and discovered that due to a sagging bladder, it did not empty completely and that was also contributing to my continuous urinary tract infections that started back in 2002 when I had AC. The Estring, even though pliable, was helping to prop up the bladder so it could empty better.

To make a long story short, the urologist and gyn gave me a pessary (a larger ring that is less pliable to insert - you can view them online by Googling pessary) and an estrogen cream to apply every 3 days (also approved by my onc). I remove the pessary and reinsert with the cream on it about once a week which seems to be enough. As a result, the dryness problem is pretty much history and the incontinence is resolving itself. Have not had a UTI for several months (knock on wood)!!!

BTW, I have been on wkly Navelbine continually for almost a year along with wkly Herceptin so the dryness would have definitely been an ongoing issue.

Hope this isn't too much info – I had a hysterectomy in 2001 with ovaries also removed, I am turning 60 this year - and libido is doing OK.

Hope this helps.

[mamacze]

Karen,

Thank you for your advice...I was on an estrogen ring but my oncologist told me absolutely no hormones and I am ER/PR negative. He also vetoed estrogen cream. I wonder why the difference...I am metastatic Her2+++ and ER/PR -, with mets to the lungs ...post total hysterectomy...and actually, I am getting worked up now for another primary neuroendocrine tumor, unrelated. Well, don't get me wrong, we can get creative, but Al is right, it is an issue that the onc's just aren't prepared to address.
Love Kim from CT

Dear Kim and Others,

There is no explanation for why so many oncs and other docs have such different outlooks on these subjects. I am also metastatic (lungs and sternum), ER/PR- and her2+++). As mentioned in my original email, my dear friend whose is ER/PR+ and whose family has the BRCA gene, was the one who told me about the Estring and she is using it with the blessing of her onc.

Somewhat along these lines, my onc told me the reason I was getting so many UTIs was that I take too much Vitamin C - I take even more since that conversation and the UTIs have stopped.

My onc also told me all food turns to sugar so cutting back sugar doesn't matter. However, the UCSF Comprehensive Cancer Center is hosting a "Cancer as a Turning Point" conference September 9 & 10 and one of the main presenters is Patrick Quillin, author of books including "Beating Cancer with Nutrition." Chapter 11 of his book is entitled, "Sugar feeds cancer."

My gyn wrote in the report of my last visit with her that I am promising to cut out probiotic capsules - she implied these were contributing to my UTIs. There was no point explaining to her that there is a difference between healthy bacteria in the intestines and the e coli that I was having in my urine.

Whether or not to take vitamins such as C and E during chemo and rads is another whole discussion....

Take care.