5 yuears of chemo i now know what the pain is

[burrowes]

hi helmar,dian07,marie3b,and crecco.
well girls after my check up today at the hospital, i finally have found out why i cant walk far and what the pain is inbetween my shoulder blades and why i feel so un fit.
i saw a doctor who did not fob me off telling me that it was fatige or that i had bad posture,
like the others, he actually sat and listend to what i told him , he sent me for an xray of my back,
it turnes out that because i was only 47 when i had my historectomy, i had a forced menapause, this has caused my bones to be brittal and he is sure i have thining of the bones known in the medical field as ostiophonosis, i think thats how you spell it. i have to go and have a bone density xray to confirm this but it all makes sence to me.
they did want to put me on HRT after my opp in 2002 but i was taking HRT before i fell ill and a while after that there was a big issue linking HRT to ovarian cancer and breast cancer and seeing i have the BRACA2 mutation, there is no way i will risk going back on that.
i have looked it up on the internet and it can be treated , good news.

i hope your check up went well today helen
keep your chin up
love to all
julie

[brownize]

interesting info..re..braca

good to know tunors shrinking.
im still doing well on gemzar and cisplatin..ca 125 still at 12
but things change quickly with me.. my system seems very erratic.

keep having good luck


brownize

[tweety68101]

I had the BRACA 1 &2  test because I have 2 young daughters that I was concerned for .   My test came back negative . It doesn't put them in the clear but it does somewhat lessen their chances. It put my mind at ease a little.

[marie3B]

Since learning of it in your post I have looked into the PARP inhibitors and am very interested. I will definitely question my onc on my next appointment. I am so happy the trial drug helped you. I will never give up hope either.....on any of us.  Marie

[burrowes]

hi brownize
the reason i mentioned to helen about having the BRACA genetic test done is beceause , tis time last year i was at a stand still i had had to much chemo and they would not give me any more, 5 years of it is a lot i guess.... any way i was and am not ready to go yet, i had heard of a new drug that was being tested on a phase 1 trial, that the doctors were really excited about,it is designed to react againsted the BRACA 1 and 2 mutations, any way i had the test done and i did have the BRACA 2 mutation, in june 2007 i was put on the trial drug, i am now in part remission,with all tumors gone even the one that was on the top of my liver i now have a 8mm one left,
so as far as i am concerned it was worth my while being tested, it will give me at least 2 maybe 3 years extra and then there might be more drugs available , i will never give up hope.


julie

[brownize]

i did take the braca tet at my daughters urging..my insurance covered it.. i really cant see the purpose.  my three daughters and my granddaaughter will always have to be extra careful thru their lives..( it was negative.)
not mentioned before, the week that i was diagnosed with ovarian , one of my daughters discovered that she had breast cancer..and later on had a mastectomy..this was in a family that had no cancer ever until the previous year when an 80 year old brother of mine died of lung cancer.

[Helmar]

Hi Julie... I've spoken to my Oncol. about being tested for the BRCA genes and he says No.  He told me that if there had been other family members before me, who had contracted ovarian or breast cancers, he would have gone along with my request. My daughter needs to stay alert though, and ensure that she had some scans in the future to keep up with this stuff.
I hope your weekend is going great too Julie. I've been celebrating my special day... and also the 4th.anniversary since being dx.. It's nice to be still here. *laugh*....
Happy hugs...Helen..

Hi brownize... good to see you here too A. I'm so pleased about the Gemzar/Cisp. working so well for you. That's great. Hang onto that 12.... I'm so envious. :-)
Wishing you all the best.. and I'll stay in touch mate....hugs..Helen...

[crecco]

Glad to hear that it wasn't the cancer causing your problems. Osteoporosis may not be the best but it is far better than cancer! And now hopefully they can take care of the pain you have been in.
I also have not had the genetic testing done. I guess that I should look into it.
I wish you the vry best and hope that you will continue to stay in remission for a very long time.
                                        Chris

[brownize]

ive joined the forum.
.my daughter is a regular 'poster'..going by the name of saphire.
.i am
1/12 years4th stage ovarian cancer....doing well..gemzar-cisplatin......hair thinning once again..but not the full drop out
,i was under 25 in my  ca125  count for 13 months and then a rise to 7oo.. down again dramatically to 12,, and feeling ok.
so women..keep plugging,, things change all the time.

.brownize

[burrowes]

hi helen
my daughter went to see the genetics people on moday to be tested, i went along as well because i had a few questions to ask, i asked the question, surley shoud "nt every body that has cancer be tested for any genetic mutations because even if there is not any history in the family, some one has to start the ball rolling. i was not in their catorgory because the only person in my family to pass away with cancer was my nan and even then we did not know what type of cancer she had, but because i responded to carboplatine very well they decided to do the test , i now owe my life to this guy, because last june i was at a stand still icould not have any more chemo , they said i had had to much over 5 years and my tumors were growing very fast.
this drug has put me into part remission and they have said that because i have responded so well it should hold the cancer for a long time.
as far as i am concerned this new drug known as PARP inhibitor is going to open up a whole new world for cancer sufferes. helen if you can please try and be tested you never know and if you are a BRACA1 or 2 genetic mutation it will give you another option for treatment.

have a lovely weekend
love
julie

[Helmar]

Hi Julie... I haven't had any tests for mutations as I am the 'first cab off the rank' with cancer in my family. There is no history of any type of cancer on either side of my ancestors, so it looks like I'm the trouble-maker. :-) I have a daughter who I worry about now, though. It's nice and sunny here today, so I spent a little time in my garden, just trimming the dead-heads off the roses. They will be finished soon. The evenings are getting cooler now, so it will be Autumn here soon... then Winter. BBrrrrrr.
I hope you are feeling well, and enjoying your weekend. hugs...Helen...

[marie3B]

I have been putting off the genetic test due to expense, but I'm going to do it ASAP. Thank you for all of the information. Bone loss could very well be my source of pain too. Who knows. I'm kind of a physical mess right now. I'm very interested in the PARP inhibitors you told us about. I have a strong family history of ovca. Love to all, Marie

[katems]

Hi there

I also live in the uk and have just had the gene test to see if I carry the BRAC1/2 mutations. I have a sister diagnosed at 59 yrs and three cousins all with breast cancer. They are all alive and well but when I was diagnosed with the ovca, my oncologist authorised the testing for me. The test cost me nothing and fortunately I do not carry the faulty gene. (I do have two daughters and three little grandaughters and was concerned for them)

best wishes from chilly Herefordshire

kate

[burrowes]

hi helen have you been genetic tested ? because these drugs they have put me on are working and last june i was in your situation , they are called PARP inhibitors and they are designed to react against the BRACA 1 and 2 mutations.
in england you have to have more than two people in the family history who has passed away with cancer before you are eligable to have the test, but you can pay privatly to have it done over here it costs about 1000 pounds .

its not sunny today
keep your chin up
luv
julie

[Helmar]

G'day Julie... Well that's a real relief... and as dian says.. osteoporosis can be treated. I don't think I would be interested in HRT either. That's good that you found a Doctor who listened to you, and was able to find the problem. His blood is worth bottling. *laugh*...
I saw my Oncol. and my numbers dropped down by 910, but I'm still over 6000 but feeling really well. My Oncol. is going to give me the 6th. and final treament of Taxotere/Carbo next Wednesday, so I have a nice long weekend off, which will be great. Not sure what's next for me, but he is keen for me to have a mini break off the chemo, but with over 6000 I'm not sure about that.
I hope  you are feeling well Julie, and you will soon be doing cartwheels around your garden.... in the sun. :-)
Sending you lots of summer hugs...Helen..

[dian07]

It is a mixed bag of news but THANK GOD IT IS WHAT IT IS.....YEAHH!!!!  Osteoporosis can be treated and it is a lot easier on a body than chemo....I am so happy for you....thanks for sharing the good news.  I have been diagnosed with osteopenia (sp?)...that is the beginning of osteoporosis.....after all the other stuff I wasn't fazed.  Hopefully your back aches will shortly be a thing of the past.....at least now your mind can rest.  Love you kid.
Peace.
dian