estrogen therapy: I am an older woman in my late... - CLL Support

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estrogen therapy

Bethsaida profile image
23 Replies

I am an older woman in my late 70s. I have been on the estrogen patch for many years after a complete hysterectomy in 1987. I was diagnosed with CLL in 1998 after being monitored for high wbc for 4 years prior to the diagnosis. Due to enlarged under arm lymph nodes and wbc of 35000 I was treated after diagnosis with what they gave at that time which was called pulse dosing of chlorambucil and prednisone for 4 days a month for 4 months. Wbc reduced to 17000 and no more enlarged lymph nodes although one was removed and biopsied prior to diagnosis. No treatment since. I am sure no one would be treated like that today but that was in fact the “dark ages”. I also was tested in the early 2000s which showed me to be 13q deleted and mutated. My question is has anyone been told they should stop their estrogen patch? My oncologist who recently retired said he was ok with it as long as I was mobile. I have not had the conversation with my new oncologist but one of my CLL friends said he told her to stop taking the estrogen pill and she did. I really don’t want to stop unless it is not safe. Anyone else with this dilemma?

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Bethsaida profile image
Bethsaida
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23 Replies
cujoe profile image
cujoe

Bethsaida - While I would not presume to be able to answer your question, it is worth pointing out that the oral E2 pill has to go through the liver, while the patch does not - as it doses directly in the blood stream. The point being, that the method of dosing may well be a factor in any recommendation concerning continuing HRT. (It seems to me that bone health would be a major concern for stopping HRT at any postmenopausal age.)

I can also link you with an excellent podcast where Dr. Peter Attia completely deconstructs the NIH's Women's Health Initiative Study that led to a whole generation of women refusing HRT.

You've got a fine treatment history. May it remain so.

Stay Safe & Well,

Ciao - Capt'n cujoe

Bethsaida profile image
Bethsaida in reply to cujoe

Thank you. Never thought about the difference in dosing methods. Also I do have strong bones. I intend to advocate for continuing the patch even if oncologist has doubts. It’s worked so far.

TruthJunkie profile image
TruthJunkie in reply to Bethsaida

I see my gyn tomorrow. Have used vaginal estrogen since complete hysterectomy many years ago. Good bone tests. I hope to continue to use this, going forward. It isn’t much, but I think that it helps a bit.

Sewster profile image
Sewster in reply to cujoe

I agree about that podcast - excellent!

Moon-shadow profile image
Moon-shadow

Bethsaida- I'm currently on a compounded cream of biest, progesterone, and a small amount of testosterone. I am fortunate to live just a few miles from a compounding pharmacy. The costs of the cream is about the same as for patches. I'm in my mid- sixties and have had hormone therapies for the last 15 years. My PCP isn't concerned about liver clearance- my dosage is low, and my liver values are within normal limits. Need to make it clear that there is no history of breast cancer, or blood clotting (so far) in my genetic history. My CLL specialist (university setting) hasn't even commented on it in the last four years, so assuming I'm good. WIthout hormone therapy, my mood is low, my bladder leaky, and my joints are oh-so creaky. My bone density remains within normal limits. I think there was one very small PubMed study regarding the use of testosterone in women with CLL. Good luck!

grandmaof10 profile image
grandmaof10 in reply to Moon-shadow

I use a trachea with estrogen, testerone, DHEA, and progesterone. All my doctors have been ok with it

Bethsaida profile image
Bethsaida

thanks for the info

bettyba profile image
bettyba

Hello - try and speak to your menapause doctor and find out pros and cons and then you can have an informed discussion with your CLL specialist. May be your menapause doctor could write to CLL specialist and let them know your concerns and relay the pros and cons in writing and then you can all make the best plan for you moving forward. Take carexx

Poolgirl profile image
Poolgirl

I had a complete hysterectomy following a cyst which showed pre cancer cells. For me it turned out there were no cancerous cells in the material biopsied from my hysterectomy My surgeon said no to HRT but my CLL doctor said it was fine. I am in my 50s and was still menstruating when the hysterectomy was performed. I went 3 months before I was put on estrogen. Those 3 months were horrific I had no idea what a significant impact hormones had on physical and mental health.

I realize every case is different but this was my experience. I wish you good luck and good health.

1susiE profile image
1susiE

agree not to be taken orally also need to balance with progesterone try getting a Mirena iud have had mine for 4 years will get a new one in May. Very common in Europe women continue on HRT until dying at ripe old ages!

FloridaGal2 profile image
FloridaGal2

Among women age 65 and older, those who took estrogen alone or estrogen plus progestin had an increased risk of developing dementia (7, 8). Stroke, blood clots, and heart attack. Women who took either combined hormone therapy or estrogen alone had an increased risk of stroke, blood clots, and heart attack

hazelton profile image
hazelton in reply to FloridaGal2

Not accurate. Please read reference suggested above.

FloridaGal2 profile image
FloridaGal2 in reply to hazelton

Well according to American cancer society, Cleveland Clinic, etc. the risks outweigh benefit of long term use...

Zia2 profile image
Zia2 in reply to FloridaGal2

I had a hysterectomy in my mid50s and so did a good friend. We’ve both been told by all docs no estrogen. (She was married to one). I’m going to talk to CLL specialist this month so I’ll ask again what risks they’re specifically concerned about. We’ve both been told the risks outweigh the benefits.

FloridaGal2 profile image
FloridaGal2 in reply to Zia2

Absolutely...perhaps in other countries medical advice differs.

Zia2 profile image
Zia2 in reply to FloridaGal2

true!

Palmetto profile image
Palmetto in reply to Zia2

As someone who had endometrial cancer estrogen positive at 72 last year and had a hysterectomy. I never had hormone replacement and I have very high bone density and muscle composition and I just lost quite a large amount of weight to reduce as much fat as possible because fat cells produce estrogen. Estrogen is the last thing I want to replace and if I do say so it hasn’t made me age more rapidly not to have had hormone therapy.

Moon-shadow profile image
Moon-shadow in reply to FloridaGal2

Ediemarie- was this report from the Framingham Nurse's Study? If so, much of the information from this study has been debunked. It is very important to do judicious homework regarding the use of hormone replacement- much the same as learning about CLL. Also, many physicians don't know a whole lot about hrt, I actually work with an NP who has spent many hours learning about the use of hormones in pre- and post menopausal women.

FloridaGal2 profile image
FloridaGal2 in reply to Moon-shadow

Tell that to all the US doctors and medical institutions. I don't think it's worth the risk...there are others ways to improve bone density

hazelton profile image
hazelton

that is unfortunate.

sophia60 profile image
sophia60

My oncologist/hematologist wanted me to stop my bioidentical hormone treatment I was taking for over 10 years. I was taking it for post menopausal symptoms. Estrogen does increase the risk of various type of female cancers and we, with CLL, are also at risk for the development of other cancers. I hated to stop mine too, but I did. However, because all of our situations are different I think it would be best to get a couple additional opinions.

New-bee-cell profile image
New-bee-cell

I’m about 20 years younger and have an intact uterus so I use an estrogen patch and Prometrium. My hemo-oncologist said it was fine and did not contribute to the growth of CLL. There may be other risks with extended estrogen use. A risk/benefit decision - like all medication use!🙂

Eucalyptus22 profile image
Eucalyptus22

I am on a low dose estrogen patch and oncologist is fine with it. Life without it just isn't worth living.

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