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Dealing with recourrence and lack of treatments

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(@margret)
Posts: 21
Eminent Member
 

Dear Maria
I can understand you so well! I can't imagine how to deal the situation if my mum would not have anymore any treatment option. It would be so hard. Today we received the result of the CT of my mum. Fortunately it show any tumor, of course I'm very released, but I'm also conscious that it is only a picture of the moment. Because my mum had two positive paraaortic lymph nodes, they suggested to stop Carboplatin/Taxol after 4 cycles and to start radiotherapy and Cisplatin. I hope it is the write decision. Us you know, I researched also for protontherapy, it would be possible in Heidelberg and in New Jersey. In Heidelberg they have also a trial, APROVE, for ginecological cancer and protontherapy. Unfortunately it is very expensive, about 75000 Dollars. But you could write them, they respond in a few days.
https://www.heidelberg-university-hospital.com/es/enfermedades-y-tratamientos/enfermedades-tumorales/terapia-de-protones-y-terapia-de-iones-de-carbono/
I wish you and your dear mum all the best and peace in heard. I try again and again to give all in the hands of God. I pray that all goes in the best way, even if it's not like I would wish it, I believe He would guide and help me. But I have also moments in which I'm sad or angry. I give you a strong hug and I'm thinking about you!
Margret

 
Posted : 17/07/2019 10:23 am
(@motherblogger)
Posts: 14
Active Member
 

Maria--Blessings as you and your mother make your way through this challenging disease. I wish I could've replied earlier, but like many of us, I've been in the GCS war zone, for lack of a better description.

My prayer is that this website can open up awareness of this more rare form of cancer and that we can wake up our medical professionals to so many elements of detecting the disease and then treating it.

Personal experience shows me that there is a reluctancy to publicly speak about uteruses and all those parts that make us fantastic women. I've shed that era of modesty and now publicly share with who ever will listen or read that there are symptoms, like vaginal spotting, that must be addressed ASAP.

It's all I can do to feel better about this war zone is to educate others in any way I can.

2020 LET MAKES SO NOISE!

 
Posted : 04/01/2020 10:13 am
(@cheers)
Posts: 12
Active Member
Topic starter
 

Dear Ann, Margret and Charmaine,

Sorry for not showing up in such a long time. My silence during this long period was dued to the worsening of my mother health, specially from September on. She finally died at the end of January and I have been through a dreadful period since then. I am not going to go in depth on details but I would like to mention that, once my mother had no solutions, doctors washed their hands of her. It is something I am not going to forget in my whole life. It was me who had to search for palliative care for her.
In any case now I am starting to feel as coming out to the world and get in touch with those who did something for me. First of all I would like to thank from the bottom of my heart for all your support, your prayers and your positive energy. Even though the situation for me and my mother could not be worse, I always had in mind this forum and CSC forum where many women with the same problem have been so generous to share their experiences while encouraging others. It is an enormous proof of altruism and inspirational example. Thank you all.
Then I would also like to thank to the CGS Project all the information I got. In my country, Spain, has been literally imposible to find the counterpart of this Project so, as you might guess, the information I could obtain came exclusively from USA. For this reason, now that I feel stronger and want to do something to defeat this disease, I want to be part of this Project. My idea is to help to translate the website into Spanish for the Hispanic world (all Latin America, part of USA and Spain). I am sure that many women and their relatives from those countries are so lost as I was because they cannot get information from anywhere. Please, if you know the person in charge of this website let her/him know that I am more than willing to work with them. I am aware that my mother is not coming back, but I can look at other side while this rare disease is taking away the life of such wonderful women as my mother´s.
Charmaine, I agree with you regarding the reluctancy to speak about gynecological cancer. But is it also true that GCS is very destructive, my mother had a good prognosis but eventually it ended up very badly. We need more resources and more researching to eradicate it: making noise, rising awarness and fundraising money. By the way, how are you doing lately? Please, don´t stop posting your updating news, I love to read them.
I have also noticed that the forum is not as lively as it should be. I also want to commit myself to put my part to bring it to life and revitalise it. We need to share as much experiences and information as we could. Let´s try to be more active. I definitely will be.
Margret… since we are the few non-English speakers here I have been thinking of you a lot. Sorry if I was not able to communicate with you but I would really appreciate to know how is your mother going. Please, give us a brief summary of you both. Send you all the courage of the world and, if you need any support, I am here to support you. The same for you, Charmaine.

For those of you who normally pray, please, do it for my mother. She was 74 years old and she was a great and lively person who did all she could to survive. My heart is now empty without her. She deserves this little tritube.

A huge kiss from sunny Spain

 
Posted : 10/03/2020 6:32 am
(@wiltke)
Posts: 42
Eminent Member
 

Dear Maria,

I am so sorry to hear about your mother's passing after such an awful ordeal. Thank you for letting us know what has been happening. This disease is difficult to manage with even the best specialists and treatments at hand, but it is even more frustrating when the health care options aren't open to patients - in your mother's case because of restrictions in the NHS. It seemed to be especially difficult to work outside of the public health system to get your mom treatment that might have controlled the tumors. As you noted, it is different in the US, but we still run into problems when we try to utilize specialists and treatments outside of our insurance plans. Most of this stems from the fact that GYN carcinosarcoma is such a rare disease and rare diseases get insufficient resources.

I am so moved by your offer to help us make this information more accessible to Spanish-speaking patients and families. I will let our Board of Directors (my fellow volunteers!) know and get back to you by email. I can envision having our content/articles available in Spanish as pdfs or perhaps as separate webpages. Thank you so much for your suggestion and generous offer of support.

Finally, your point on the quietness of the Forum is well taken. We've noticed it also. I believe it is because we no longer push out notifications to all participants when there is a new Forum post. We halted this practice because of complaints of unwanted email, but we need to reassess this. I think it would help us build this important dialogue. Our founder, Diane Redington, strongly believed that the Forum was a critical part of our mission, and we would like to strengthen it so that it provides consistent support for our community members.

My deepest condolences,
Kathy Wilt (Medical Advisory Committee Chair, The GCS Project Board of Directors)

 
Posted : 10/03/2020 4:06 pm
(@motherblogger)
Posts: 14
Active Member
 

Dear Maria:

My heart aches for you. May all the blessings of love and light find their way to you, and to your late mother.

How do we educate women about this odd and rare cancer? Honestly, during my plethora of hospitalizations for this challenge, I've had nurses say, "I never heard of such a cancer." Me: "Well, honey, let me tell you a little story about a girl called Char..." I begin.

And even where I'm in treatment, there is a dearth of GCS information among personnel.

I think translating information into Spanish is GOLDEN. It's my suspicion that this would bring heavenly smiles to your mother if you could help facilitate this idea.

The motto "And she presisted" plays well here.

My deepest condolences -- and let's make some noise in Spanish!

 
Posted : 11/03/2020 9:05 am
(@cheers)
Posts: 12
Active Member
Topic starter
 

Dear Kathy and dear Charmaine (and all others who are reading this post),
thank you so much for your condolences and your supportive words. There are no consolation for such a loss as a mother (I´ve not father either) and specially in the circumstances she went through. Still my brain does not accept she´s gone.
Kathy, the availability of treatmetns for my mother were not based on our Health Insurance options, as in the States, but on the suitability for her (she had previous pelvic radiations and high level of toxicity in her body). Maybe I did not make myself clear enough. Fortunately we have a real universal Health System in my country (altough currently challenged by the COVID-19).
Regarding the translation into Spanish I don´t know which is the best formula. The PDF documents are normally addressed to the general information, not including the Forum. Yet, another version of the website will allow the translation of this relevant part which, as Diane´s well envisioned, is the core of this Project, the dialogue and exchange of experiences. In any case we will need more Spanish speaking volunteers to carry out such a project, but for sure I will be one of them. As a relative I felt hopeless and desperate most of the time due to the lack of information about this rare disease, so I promise to myself to do something about it for others and, above all, in my mother´s memory (not being able to sabe her life has been the most painfull feeling I have ever had).
Charmaine, I have experienced the darth of information about GCS among the medical community. I have the suspicion that the gynecologists that treated my mother had not seen many cases of this disease. We need to use this means to spread the awareness of this type of cancer, as you put it, it is golden to do it in Spanish (600 million people has it as its mother tongue).
Let me know what else I can do here… though we are confined at home in my country at this moment.

Charmaine, don´t stop to share your thoughs during this path. Hope everything is at the same point as your last post.

Kissessss

 
Posted : 29/03/2020 3:49 am
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