Ovarian Cancer - Please help

dannythakur

Alexandra said:

Hi Danny

You wrote that your wife had surgery in July prior to starting chemo. Was it just exploratory surgery and is she having interval hysterectomy with debulking now?

She has the best chance if the surgery is performed by the experienced GYN-ONC. Right after in the recovery room the surgeon will tell you if it was optimal (no visible cancer over 1 cm left). She will be able to get up and start walking the day after surgery and should be out of the hospital in a few days once her bowels start working, even less time with laproscopic surgery. Pain should be manageble with painkillers. Wearing an abdominal binder helps. Avoid foods that cause gas. Avoid constipation and straining while having BM. Staples come out in 10-11 days. Full recovery takes 6-8 weeks. I was able to drive and go shopping after 2 weeks. No heavy lifting, no reaching, no sudden movements if she doesn't want hernias or to pop the insicion.

They will restart chemo a few weeks after surgery to kill microscopic cancer cells and will do another 3-4 rounds. If they offer her IP (intraperitoneal) chemo - take it.

Best wishes to both of you.

Alexandra 

In the monht of july - the

In the monht of july - the surgery was debulking surgery where ovaries, uterus and tumor got removed. Colostomy done, post that 3 chemo are over and now one more surgery for removing of cancer tissues. 

Thanks for sharing your information. 

 

 

CRM

Hi Danny.  Where to begin?  I

Hi Danny.  Where to begin?  I was diagnosed at age 52 and am now 54 and cancer free.  There is hope.  Being supportive and loving and communicating about her needs is very important.  I did not want my husband to go with me to chemo appointments for the simple reason that I didn't want to be there either.  Also, it's very depressing to see cancer patients that look like holocaust victims and who are so depressed and weak that they already look dead.  If you go with her, try to find privacy in a corner or private room if it is available.  I think it's a good idea to avoid other patients aside from polite greetings.  During my chemo it quickly became apparent that people like to talk about their cancer illness.  I think talking about it gives it power.  Never make cancer a part of your identity.  Treat it like the life-sucking parasite that it is and focus on killing it.  Encourage your wife to do whatever is recommended to relieve the chemo side effects even if it means eating nothing but cheese or whatever tastes good to her. Chemo leaves an awful taste in the mouth that won't go away and it creates a mediciny body odor.  You will smell it and it will be a part of your life for the duration of her treatment.  My husband and I used to plan getaways after each chemo treatment, mostly to reaffirm LIFE.  If you can do minivacations, keep it simple and relaxing, nothing too ambitious.  She will need beauty, breath and comfort.  We have a hottub and it was fantastic for helping with the after chemo stiffness and soreness and feeling alive again.  Let her rest as much as she wants and snuggle by her when it feels right.  I had a blessed kitty who always napped with me and she was my angel.  Be patient, do most of the cooking and housework and baby her.  Right now she needs compassion and love more than ever.  She is frightened too.

CRM

dannythakur said:

In the monht of july - the

In the monht of july - the surgery was debulking surgery where ovaries, uterus and tumor got removed. Colostomy done, post that 3 chemo are over and now one more surgery for removing of cancer tissues. 

Thanks for sharing your information. 

 

 

Hi.  I'm glad she had the

Hi.  I'm glad she had the debulking.  I'm new to this board and am at a loss when I read that people are living with the tumors that are killing them.  I'm not a doctor but common sense says cutting it all out is the first step to getting rid of it.  I think the ones living with the tumor have a ticking time bomb in side and should seek another medical opinion.

CRM

Alexandra said:

Hi Danny

You wrote that your wife had surgery in July prior to starting chemo. Was it just exploratory surgery and is she having interval hysterectomy with debulking now?

She has the best chance if the surgery is performed by the experienced GYN-ONC. Right after in the recovery room the surgeon will tell you if it was optimal (no visible cancer over 1 cm left). She will be able to get up and start walking the day after surgery and should be out of the hospital in a few days once her bowels start working, even less time with laproscopic surgery. Pain should be manageble with painkillers. Wearing an abdominal binder helps. Avoid foods that cause gas. Avoid constipation and straining while having BM. Staples come out in 10-11 days. Full recovery takes 6-8 weeks. I was able to drive and go shopping after 2 weeks. No heavy lifting, no reaching, no sudden movements if she doesn't want hernias or to pop the insicion.

They will restart chemo a few weeks after surgery to kill microscopic cancer cells and will do another 3-4 rounds. If they offer her IP (intraperitoneal) chemo - take it.

Best wishes to both of you.

Alexandra 

Abdominal Binder

I couldn't agree more with the recommendation of binding after surgery.  I was up and around very quickly thanks to binding.  My doctor didn't recommend it, I just did it on my own having used back support in the past.  Only this time, I turned the back support belt around to support my belly and limit gravity from pulling on the surgical spots.  That is what causes the pain and keeps women bedridden.

Alexandra

CRM said:

Hi Danny.  Where to begin?  I

Hi Danny.  Where to begin?  I was diagnosed at age 52 and am now 54 and cancer free.  There is hope.  Being supportive and loving and communicating about her needs is very important.  I did not want my husband to go with me to chemo appointments for the simple reason that I didn't want to be there either.  Also, it's very depressing to see cancer patients that look like holocaust victims and who are so depressed and weak that they already look dead.  If you go with her, try to find privacy in a corner or private room if it is available.  I think it's a good idea to avoid other patients aside from polite greetings.  During my chemo it quickly became apparent that people like to talk about their cancer illness.  I think talking about it gives it power.  Never make cancer a part of your identity.  Treat it like the life-sucking parasite that it is and focus on killing it.  Encourage your wife to do whatever is recommended to relieve the chemo side effects even if it means eating nothing but cheese or whatever tastes good to her. Chemo leaves an awful taste in the mouth that won't go away and it creates a mediciny body odor.  You will smell it and it will be a part of your life for the duration of her treatment.  My husband and I used to plan getaways after each chemo treatment, mostly to reaffirm LIFE.  If you can do minivacations, keep it simple and relaxing, nothing too ambitious.  She will need beauty, breath and comfort.  We have a hottub and it was fantastic for helping with the after chemo stiffness and soreness and feeling alive again.  Let her rest as much as she wants and snuggle by her when it feels right.  I had a blessed kitty who always napped with me and she was my angel.  Be patient, do most of the cooking and housework and baby her.  Right now she needs compassion and love more than ever.  She is frightened too.

Hello CRM

Congratulations on being cancer-free and sorry you got fired due to cancer. That's not fair.

I suppose everyone's chemo experience is different: throughout my 7 rounds of Taxol / Carboplatin I was never weak or depressed, I never smelt any mediciny BO on myself or any other chemo patients, didn't have any unpleasant taste and never lost appetite. In my opinion socializing with other patients, sharing experiences and attending support groups is helpful; it does not make cancer part of your identity, it makes you a decent human being, conscious to the suffering of others. Being grossed out by other cancer patients' appearance is not something I would discuss on the cancer forum. I also don't see the point of the husband hiding in the corner or private room while the wife is getting chemo; it's cancer, not leprosy. And I can't imagine why anyone would compare chemo patients to "holocaust victims", but I am Jewish and may be oversensitive.

Good luck to you, your husband, your son and your blessed kitty.

Alexandra

ConnieSW

Alexandra said:

Hello CRM

Congratulations on being cancer-free and sorry you got fired due to cancer. That's not fair.

I suppose everyone's chemo experience is different: throughout my 7 rounds of Taxol / Carboplatin I was never weak or depressed, I never smelt any mediciny BO on myself or any other chemo patients, didn't have any unpleasant taste and never lost appetite. In my opinion socializing with other patients, sharing experiences and attending support groups is helpful; it does not make cancer part of your identity, it makes you a decent human being, conscious to the suffering of others. Being grossed out by other cancer patients' appearance is not something I would discuss on the cancer forum. I also don't see the point of the husband hiding in the corner or private room while the wife is getting chemo; it's cancer, not leprosy. And I can't imagine why anyone would compare chemo patients to "holocaust victims", but I am Jewish and may be oversensitive.

Good luck to you, your husband, your son and your blessed kitty.

Alexandra

Danny

Although I had uterine cancer, I was treated with the same drugs as Alexandra.  My experience was much like hers except I did lose my appetite.  It was nothing like the previous poster experienced and I really valued my time with the other ladies in the chemo room.  We supported and educated each other.  

pattysoo

Advice to the primary caregivier

Three years down the road with this disease and I've started to be more active in seeking respite for my husband who is my primary caregiver. I rely on him for so much and recently realized that I can encourage him to get away from it all now and then. So he goes to play raquetball with a friend, has a part time job he enjoys, and allows friends to accompany me to chemotherapy now and then. He worries that I don't tell him everything, but I now try to screen out my more unsubstantial worries. This is good self monitoring for me too. So, if you can, be sure to take care of yourself. It's ok for you to have a break now and then. I hope you have support from friends and family that allow you to do that.

Chemohubbyau

Ovarian diagnosed

Hi my wife has also been diagnosed with ovarian cancer. We are yet to be told what stage we are looking at. It was found by default after all ultrasound external and internal plus cat scans all suggested a gall bladder problem. Fortunately the surgeon opted for a laproscopy and discovered some tissues that shouldnt be there. They called in our local gynacoligist who was 2 weeks from retirement who called the Mercy Hospital gynacological oncology unit and we were off to the big city ( we live 2 hours east of Melbourne). She has had 2 cycles of carbo/taxol with a scan to be done next week then discussions on possible surgery (we hope not) or 4 more cycles of chemo. Afer the first round we went thru he highs and lows in the first week then had some great days until round 2. During the 2nd round she had a reaction to the taxol and after a half hour break was able to continue with the chemo. Today is day 5 after chemo and we have had a shocker. With no sleep last night and an upset tummy with pains similar to the reaction she had during the last treatment she had some severe panic attacks. I contacted our local doctor and got some diazapan which has settled her down very well and we are hopefull that a good nights sleep will make for a better day tomorrow. Sorry to prattle on but would like to hear any ideas that can help me look after her better.

Pamela B

I have to say the husbands on

I have to say the husbands on this board are amazing!  Well done gentleman your wives are lucky to have you at their side.  Everyone's experience is different.  Find the best doctor you can, someone you like and believe in, and go with it. Stay positive and know it is a chronic, treatable disease.  I had 5 rounds of IP/IV Taxol and cicplatin.  I did have a funny odor during chemo but I never lost my appetite or had any nausea.  In fact, because of the steroids I gained weight.  Research all you can and listen to the experienced advice from this board. These ladies are lovely and we will all share what ever we can to help your wives. Wishing you all the best.

pattysoo

Chemohubbyau said:

Ovarian diagnosed

Hi my wife has also been diagnosed with ovarian cancer. We are yet to be told what stage we are looking at. It was found by default after all ultrasound external and internal plus cat scans all suggested a gall bladder problem. Fortunately the surgeon opted for a laproscopy and discovered some tissues that shouldnt be there. They called in our local gynacoligist who was 2 weeks from retirement who called the Mercy Hospital gynacological oncology unit and we were off to the big city ( we live 2 hours east of Melbourne). She has had 2 cycles of carbo/taxol with a scan to be done next week then discussions on possible surgery (we hope not) or 4 more cycles of chemo. Afer the first round we went thru he highs and lows in the first week then had some great days until round 2. During the 2nd round she had a reaction to the taxol and after a half hour break was able to continue with the chemo. Today is day 5 after chemo and we have had a shocker. With no sleep last night and an upset tummy with pains similar to the reaction she had during the last treatment she had some severe panic attacks. I contacted our local doctor and got some diazapan which has settled her down very well and we are hopefull that a good nights sleep will make for a better day tomorrow. Sorry to prattle on but would like to hear any ideas that can help me look after her better.

sleeplessness and panic

Possibly it's steriods that don't allow her to sleep and then panic attacks follow. Steriods are given along with benedryl and sometimes ativan and/or pepsid to buffer the effects of chemo. Ask her physician if these medications are giving her problems like you describe. Sometimes just knowing that it's the meds can help you cope. I use the steroid "high" to get lots of things done the day after chemo. Then I crash for a day or so - meaning lots of rest time. After that I perk back up until the next round. (sigh)

dannythakur

Thanks indeed all of you for

Thanks indeed all of you for sharing your experience and for your support. 

 

Aftert three chemo, when doctors did surgery they could see again many cancer nodules inside the body - spread over near by areas. 

 

Does it mean chemo not working ?

 

Doctors have asked to repeat 3 more cycles of chemo, paclitaxel and carboplatin. 

 

Kindly suggest. 

Alexandra

dannythakur said:

Thanks indeed all of you for

Thanks indeed all of you for sharing your experience and for your support. 

 

Aftert three chemo, when doctors did surgery they could see again many cancer nodules inside the body - spread over near by areas. 

 

Does it mean chemo not working ?

 

Doctors have asked to repeat 3 more cycles of chemo, paclitaxel and carboplatin. 

 

Kindly suggest. 

Hello again Danny

Your wife had her main surgery debulking / hysterectomy back in July followed by 3 rounds of Carbo-Taxol and second-look (?) surgery in Septemer. Just because disease was found inside her does not mean that chemo is not working. Actually the fact that doctors intend on continuing 3 more rounds of the same chemo tells me that it's working. If her CA125 is decreasing - chemo is working. If her tumors are shrinking in size - chemo is working. Even if all cancer was removed by the surgeon, it's common practice to do total 6-8 rounds of chemo to get rid of microscopic cancer cells.

I would ask her doctor about the status. If they are not being forthcoming and clear - request the copy of the progress notes, CT scans, blood tests, surgical transcripts and surgical pathology and get the second opinion. From a reputable Gyno-Oncologist, not on the internet.

My best wishes to you and your wife.

Alexandra

Loewenhart

Tethys41 said:

It is a scary diagnosis for everyone

I'm sorry to hear that your wife had this diagnosis.  She really has a choice.  She can follow only the advice of her doctors, or she can be proactive and take an integrative approach.  I took the second choice and am 3 1/2 years in remission (NED), despite my suboptimal debulking (after a diagnosis of stage IIIc, very aggressive ovarian cancer) and my doctor's prognosis that I would not live beyond a year.  I've learned a lot about the body and what actually causes cancer through seeing a naturopath, who herself is a 21 year survivor of stage IV ovarian cancer.  It just makes sense to me that a healthy body does not grow cancer.  So there are imbalances and malfunctions present even before the cancer grows.  Thankfully my naturopath has identifed my body's weaknesses and we work dilligently to keep it working properly with diet, supplements, exercise and stress management.  My best advice to you would be to find a practitioner who takes an integrative approach, to augment your wife's treatments and to, prehaps, make them more effective.  I hope all goes well for her. 

Hello
I also have advanced

Hello

I also have advanced aggressive Cervial cancer and waiting word on a possible clinical trial. I'm interested in usinging an integrative approach. How do you find a good naturopath? 

Thanks for any advice

Alexandra

Loewenhart said:

Hello
I also have advanced

Hello

I also have advanced aggressive Cervial cancer and waiting word on a possible clinical trial. I'm interested in usinging an integrative approach. How do you find a good naturopath? 

Thanks for any advice

Naturopath

Mo, Tethys is no longer on this board.

Naturopath she was going to is Dr. Nasha Winters, The Namaste Health Center, 1800 E. 3rd Ave., Ste 112, Durango CO 81301, 970.247.2043, namastehealthcenter.com.

 

In GTA check out Dr. Ahmad Nasri, Nasri Functional Medicine Clinic, www.nasriclinic.com, info@nasriclinic.com

7611 Pine Valley Drive, Unit #7, Woodbridge ON L4L0A2, (905) 266-0959

730 Essa Rd., Barrie ON L4N9E9, (705) 735-2354

I had a consultation with Dr. Nasri once ($180), was not particularly impressed with his credentials and decided not to proceed.

But maybe you will feel differently.

dannythakur

Alexandra said:

Hello again Danny

Your wife had her main surgery debulking / hysterectomy back in July followed by 3 rounds of Carbo-Taxol and second-look (?) surgery in Septemer. Just because disease was found inside her does not mean that chemo is not working. Actually the fact that doctors intend on continuing 3 more rounds of the same chemo tells me that it's working. If her CA125 is decreasing - chemo is working. If her tumors are shrinking in size - chemo is working. Even if all cancer was removed by the surgeon, it's common practice to do total 6-8 rounds of chemo to get rid of microscopic cancer cells.

I would ask her doctor about the status. If they are not being forthcoming and clear - request the copy of the progress notes, CT scans, blood tests, surgical transcripts and surgical pathology and get the second opinion. From a reputable Gyno-Oncologist, not on the internet.

My best wishes to you and your wife.

Alexandra

new type of chemo

Hello All, 

Hope you all are doing fine abd by the grace of god every thing is ok. 

I am coming here after a long time. 

This is to update you all that we are doing regular check up , CA 125 and CT scan every quaarter to monitor things. 

By the grace of god and your wishes, things are ok. 

Last week doctor have advised for reversal of colostomy. Also they are saying they have some new technology now where in if they will see the disease inside they will use this new type of chemotherapy during surgery only and it would be very impactful. 

Does any one knows about this new technology ?

 

Regards