cancer treatment issues

[dm9960]

Hi All,
My 14 year old daughter is a cancer survivor. She has been in remission for almost a year now. But now she is having side effects from the chemo. She has nerve damage, motor and sensory to both legs and feet and one hand, so her balance is bad, she can't run, go up and down stairs without difficulty. Now we found out she also has osteopenia. He ovaries have completely shut down, so she has to go on the birth control patch to try to strengthen her bones.
Does anyone know anything about these issues? I am so proud of her, she has fought so hard just to live, now she has to fight to try to find some normalcy. She isn't al all depressed about this, in fact, she's mad.
Thanks for any thoughts.

[dm9960]

To top all that off, my daughter's endocrinologist just called. She also has thyroid problems now. Her T4 was 5.3 and TSH was 41. So more meds again.

[southerner]

I wish I had some concrete suggestions or resources to recommend. Just wanted to post what a strong young lady your daughter sounds like. I can't imagine having to deal with all that at such a young age (I was a senior in high school when I got my first diagnosis). I can't imagine what it's like to be her mother and constantly be faced with the challenge of staying strong and positive for her benefit. Have you gotten involved with local support groups or message boards focusing soley on cancer?

The Wellness Community (http://www.thewellnesscommunity.org/) is a good place to start.

Sending healthy vibes your way.

ETA: We have a cancer support thread (http://www.constantchatter.com/forum/showthread.php?t=3118) here on CC.

[jajacobsen]

I have never had cancer, but I do have early onset osteoporosis (similar to osteopenia) and hypothyroidism as the outcome of having two benign pituitary tumors.

It sounds liek she is not producing sufficient estrogen to cause calcium to bind to her bones. What specifically did her endocrinologist say about this. For me, I eat a calcium rich dieat and take calcium supplments, and once monthly Boniva. Additionally, I do weight bearing exercizes such as yoga, strength training and running. Yoga woul dprobably help with her nbalance issues. My bone desnity is significantly depleted (my Z scores place me with teh bone desity of a 67 year old white female). I have broken my shoulders 4 times from simple slip and fall accidents, and several other bones as well. Bone loss is a silent killler and I hope you can remediate this situation.

If she is hypothyroid, which means an underactive thyroid, that can be treated with levothyroxine. One common brand (which I take) is Synthroid. This is very effective when properly taken. It is a small pill, taken first thing with waer each day. No food, juice or coffee for one hour. Then you can eat. While many people do hate teh imposition of one more pil intheir daily routine, and have trouble adjusting to not eating or drinking for teh first hour of teh day, it's really not that hard and will make the absorption- hence effectiveness - of the medication occur. Thsi medication usually must be taken for life. However it is cheap and has no side effects.

if your daughter is hyperthyroid, taht too can be treated with medication.

I don't knwo about teh otehr complications you mention.I am very sorry for your daughters ilneeses btu it sounds liek she has teh right attitude - taht of a fighter. My sister is currently battling breast and ovarian cancer but she is just in teh early stahs of treatment so I can't help with any infomation.

Good luck to you and her.

[dm9960]

Thank you for your responses.
Southerner, I will definitely check out the sources you gave me.

JaJa, Thank you for all the info. My daughter's ovaries have completely shut down from all the chemo. She has been getting low dose birth control pills for estrogen, but this scan and the latest blood work shows she needs more, so they are starting her on a patch with more estrogen and prometrium. They are hopeful that this will help build her bones up to a better level. Right now she is at -1.6
She will be starting synthroid in the morning. I also take it, so we understand that one a bit. We were told that the thyroid will continue to decline and need more and more synthroid. Does that sound right to you?
You have been through a great deal. I hope you're health is going good right now. Your sister will be in our thoughts.

[jajacobsen]

Right now my thyroid fnction is almost non-existent, because of teh damage to my pituitary. I take 100 Mcg daily. Many people do not know about teh need to take synthroid while fasting but it really does help with teh effectiveness. My throid function really can't decline any more, but hers may continue to do so,]. It wil probably level off at some point. Seh should have her Free T4 and TSh checked every 6 months. This is a simple blood test that her endocrinologist can easily do.

Is teh -1.6 her Z score from a bone density scan? Right now she is at the point inher life when she can stop the bone decline and actually build up bone mass until approx age 30-35. While teh patch may help, I also believe strongly in calcium supplements and weight bearing excercise. Ialso believe it would be appropriate to have bone scans every six months, annually at the very least. These are lso simple and easy - and less harmful than an x ray even.

My health is great. I became a poster child for a positive mental attitude and healthy living. I am careful about what I eat and extreme active. At my sickets, I continued to walk at least. I have gone on to pursue running and have completed several half marathons. (my bones cannot take the strain of the full marathon). My husband and I are having fertility issues, but they are likely related to other problems (with him) as with me. Life is good. I refused to let my healthcare problems define and limit my life. I took them very seriously but decided to not be a VICTI M to them.

My sisters situation is much more serious. However, she has a great attitude and continues her work for a non-profit, even while having a double mastectomy and hysterectomy last week (she is taking 4 weeks off). She's looking at 26 more weeks of chemo (she has completed 26) but has made plans for a cruis eto Alasks in 2008 and won't let anything stop her. Go her!

How do you feel about your mediacl advisors? can you have a discussion with the oncologist/endocrinologist to discuss teh wholistic approach to your daughters treatment? It may be that she can wean herself off some drugs. I wa son 7 at one point, but now am down to synthroid daily, and Boniva once per month.

Good luck!

[Phen]

Hey dm9960, I just wanted to let you know that my ovaries were "asleep" for over a year after I went through chemotherapy at age 33 after a breast cancer diagnosis. The doctors all said I was definitely in menopause. But those wacky ovaries of mine woke up almost exactly one year and six months after falling asleep! I had given up hope, honestly, and it was actually quite a shock. And everything I've read about chemo-induced menopause seems pretty clear that the women who have the best chances of having normal ovary function return post-chemotherapy are the younger women (early 30s and younger).

I am also on Boniva, due to having pretty severe bone density loss due to chemo and the chemopause (27% loss in one year). The boniva isn't bad, although it's pretty pricey for one pill to take once a month.

good luck

~ Phen

[Tonysweetie]

I have advice but I just wanted to comment on how strong your daughter is!

[Gabe's Mom]

There are now many "survivorship" clinics around the country. I am not sure where you live. There is one in Seattle and Seattle Cancer Care Alliance/Fred Hutch and they might be able to put you in touch with one near you. Also, you might call the NCI.

[dm9960]

thank you everyone for your help. We just found out that the neuropathy is not related to her chemo as previously thought. She has to get DNA testing to see if it's genetic. As of now they are saying there's not much they can do. She is getting shoe inserts to help with her balance and gait. As for the hormone issues, we're taking it one day at a time. she is gettingused to taking meds again.
I am so very proud of her. She has been through so much yet doesn't have any self pity of any kind, if anything, she has become a stronger person from all this.
thanks again for the support.

[southerner]

I looks like you haven't been on CC in about a month, dm9960. I found this resource while doing some 'net research and thought of you.

It's a site that is specifically focused on childhood cancers. Looks like it has a ton of info, community members, etc.

http://www.mylion.org/

Hope everything is okay w/ your daughter and your family :)