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Update on my mother´s mmmt - Recurrence, spread and bad perspective

Cheers's picture
Cheers
Posts: 9
Joined: Feb 2019

Dear ladies,

I have to say that even if I don´t write in a while I keep on reading many of your posts and I´ve noticed that many of you keep active on writing just to support others. I can just say thank you all for that involvement and commttment with us. I cannot speak for others but for me it has been one of the major supports ever. Thank you.

If I write now is because my mother is still going through this process and each time is more and more difficult to remain somewhat positive. In order to not being too long I just put here the link of my mother´s story (I think this is the thread: https://csn.cancer.org/node/318449) and just add the continuation of it up to the point we are now.

I will try to be short because we have been through so much (at least from my view). In the GCS forum website I was recommended to visit a doctor in my hometown (thank you Kathy) after my mother´s recurrence (reminder: total hysterectomy and 6 rounds of carb/tax which devasted her and didn´t prevent her from early recurrence). Great person this oncologist and his team but unfortunately we cannot afford to pay it. So we overlapped this visit with 2 other hospitals from our NHS (a very good one, to be honest). First she was offered brachy but anatomical conditions of her body didn´t let to use it. Then another surgery was put on the table but, apart from being too risky for her, it was rejected afther the last PET-CAT, where the tumor seemed to pop out of the cervix to nearby (in just 3 months!!!). I think that in the liver, but I was very afraid of asking. Though we were not very keen on the surgery this news fall into us as a cold shower.
At this point we have to see what the next treatment could be… For the moment one of them, the biggest hospital, has offered her to participate in a clinical trial if she meets the requirements (the drug is Entrectinib- Anyone heard of it before?) but, even if she doesn´t, the molecular information will let them to use the most proper meds for her tumor. But in the meantime, which is nearly two months, we don´t know what to do... For the moment, where she has been treated from the very beginning, the oncologist suggests another type of chemo for those parts of the tumor out of the cervix... Next monday we have an appointment with the other NHS hospital to see what the oncolog will suggest. From one side my mother is willing to treat again while waiting for the molecular results, because this beast seems to spread as fire, and in 2 months we don´t know how far it will be. However, my mother health condition is so sensible that I don´t know how good this will be (she has a high degree of toxicity due to previous chemo for annal cancer). It´s such a difficult dilemma! And I don´t want to influence her decision, but it´s so frustrating seeing her suffering so much and not being able to help.
We are totally devastated… Nor hope for healing, neither for some deceleration of the disease. Doctors view is so grim that it is difficult to keep some sort of hope for even a chronic condition, as other type of cancers. For them my mother is hopeless… I can see it in their faces and their eyes. Even my family and friends are asking me to be realistic. The speedness of this f****** tumor does not hepl either, it is something so outstanding that is difficult to believe.

Sorry again for this deployment of negativity but lately I am just receiving one bad news after another.

Keep you posted anyway with the coming news on treatments, though. Hope this information will be useful for someone else one day.

 

Lot of love for every of you, brave warriors.

 

jan9wils
Posts: 18
Joined: Mar 2017

I think watching someone you love suffer is so much more difficult than facing the disease yourself. I know because I lost my husband  to lung cancer 20 years ago and lost my sister to ovarian cancer 6 years ago. Please know that I will be thinking of you as you care for your mother. She (obviously) did a very good job raising you to be the caring and compassionate daughter you are as you help her battle this horrible disease.

Forherself's picture
Forherself
Posts: 75
Joined: Jan 2019

It sounds like you are doing everything possible, and that is all you can do.  Your mother is very lucky to have you by her side.  Immunotherapy might be an option after tumor testing.   If your mother wants to continue trying to treat this You can be a tremendous help.   It is so hard to watch someone yu love go through this.  Try and support her with her decisions.  I will keep you both in my prayers.  

cmb's picture
cmb
Posts: 282
Joined: Jan 2018

I'm so sorry to hear that that your mother's condition has not improved since you last wrote.  I know that you're doing as much as possible to explore possibilities for your mother. I'm not familiar with the clinical trial drug you mentioned, but I hope it does prove to be an option for her. 

In the meantime, please continue to share updates regarding your mother as you can. I suspect that some women stop posting when their condition or their loved ones' situation doesn't improve because they don't want to discourage others still hopeful of good results from their treatments.

But while I may not always have constructive advice to offer when treatment options seem limited, I still want those going through difficult times like you and your mother to know that I'm thinking of them and wishing that the path forward is what your mother, you and others close to you all agree are the right steps to take.

ConnieSW's picture
ConnieSW
Posts: 1365
Joined: Jun 2012

it better than cmb did in her last paragraph. Stay strong

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2483
Joined: Mar 2013

The ladies before me have already said it so well.  My heart breaks for you.  Your mother did a wonderful job raising you, and it shows to alll of us.  

You are not negative - this is a safe place for patients and their care givers.  You, your mother, and your family are in my prayers.

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1447
Joined: Jun 2015

I agree with those that commented before me. Please come back often and let us help lift you up. This is not an easy time for you or your mom.

Love and Hugs,

Cindi

janaes
Posts: 703
Joined: May 2016

Cheers, sorry it took so long to reply. Ive been thinking about your post the last few days and what i could write. This cancer stuff is really hard. It sounds like you are doing what you think is best. I can tell you care about your mother and what is best for her. I would say thanks for posting and im glad this place has helped you. It was a wonderful place for me while going through the though parts of cancer. I was alone with out it. Keep coming if you need to.

We arw here as long as you need us.

Primavera
Posts: 35
Joined: Mar 2019

All I can offer is hugs and prayers. Since I've started reading your stories here, every night, when I pray, I add an extra prayer for everyone. Stay strong. We're all thinking of you.

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