Dealing with recourrence and lack of treatments
April 7, 2019 at 2:26 PM #8531
I posted in this board around 2 months ago in order to find some reference from doctors with knowledge of GC in Spain. Thanks to Kathy for passing me by the information, by the way. We did not go to this doctor in the first place but we are visiting him next week because the ones we had in the Public Health System are lacking resources for helping my mother.
She was diagnosed with MMMT at the beginning of 2018 (Stage 2), had a total hysterestomy, an early recurrence before the 6 rounds of Placlitaxel/Cisplatine (which left her with severe neuropathies) and another one right after that. She was going to receive brachy but, due to previous surgeries (she had an rectum cancer in 2010), this therapy couldn´t get to the place where the tumor is. For the moment the tumor is localized but the gynecologists are quite reluctant to make another surgery and the oncologist has just prescribed her hormononal meds.
I cannot accept that this stops at this point without trying something else. Anyone going through something similar? I have read many posts here and in the CSN, and most ladies have tried many different drugs.
Thanks and a lot of strenght for everyone in this board. We are going through tough times.
April 8, 2019 at 6:05 AM #8535
I am so sorry for all the issues which have come up and for the continuing reoccurrences of your mom’s tumors. I hope that the doctor you see next week will be of help! I wish I had some answers for your questions but know that the people on this site are interested in you and what is happening! We all learn through each others’ experiences and solutions!
Please keep us posted!
April 9, 2019 at 9:33 PM #8549KathyKeymaster
I hope the new appointment goes well, and that your mother receives a new treatment plan. It’s so important to continue to advocate for her. Is she seeing Dr. Antonio González-Martín at Clínica Universidad de Navarra or closer to Madrid? There are medications for tumors that are resistant to the standard chemo, and hopefully, these will be available for your mother. Keep in touch and let me know either here or via email how the visit goes.
All the best,
April 11, 2019 at 9:52 AM #8565Lisa MyersParticipant
So sorry for all you and your mother going through. I will pray that this new doctor is able to get the other medications and that they will work for your mother!
May 15, 2019 at 2:17 AM #9172
excuse me for not having reply your warm and wonderful messages. As you may know at this point life with cancer take all your energy out from you. As much for the person with the disease as for their caregivers.
Kathy, I have to specially thank to you for the referee from Dr. Birrer, we actually visisted Mr. Martín González and he was great man.
Many things happened since that visit because we have been attending 3 different hospitals, two of our NHS and that private one, but I will try to be short. We visited this doctor in the C.U.Navarra and he offered a surgery to remove the tumor, just if the tumor was localized. We were not very keen on this surgery since the risks were very high, the outcomes not really hopefull (it could easily reproduce) and my mother health condition is a bit fragile. Unfortunately, after a PET-CAT, the tumor seemengly had came out of the cervix and installed also in the liver (to be confirmed yet but almost sure). And this happened in less than 3 months (!!!). 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 will be… In the NHS we are treated in two hospitals and I don´t know yet what they will offer us. More chemo? I don´t know. Immunotherapy in those places are just used in clinical trials… On the contrary, in the private sector (as the one you have in the USA), since you pay your tests and treatments, you can easily use immunotherapy. But, unfortunately, we cannot afford it and that is the reason we refused to be treated in the C.U. Navarra (sorry Kathy for not using your recommendation).
What can I tell you? 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. I don´t need words. The speedness of this f****** tumor does not hepl either, it is something so outstanding that is difficult to believe.
Sorry for this dark post, wonderful ladies. You deserve light and hope for your lifes, but in mine and in my mother´s there is not room for that lately.
Keep you posted anyway with the coming news on treatments, though.
Thank you all for your support and your words. This site has been the only consolation throughout this period.
January 4, 2020 at 4:13 PM #10080Charmaine CoimbraParticipant
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!
May 15, 2019 at 8:40 AM #9174
I am so sorry for your news. It does make you feel hopelessness, but sharing what we learn on this website helps those who come after us! That is the hope – that someone else will not suffer because the doctors have learned how to treat this cancer. I believe what we share here about treatments and side-effects will aid that goal! May you find peace in knowing what they learn from your mom will be of aid to someone else one day!
Thinking of and praying for you and your mom!
May 16, 2019 at 1:07 PM #9192
thank you for your supportive words. It is true that we should continue sharing our stories to contribute to future improvements in healing this horrible disease.
However I must addmit that, for the moment, this doesn´t provide me the peace and calm that my spirit really needs. Being witness of the physical and spiritual devastation of someone you love so much take you miles away from it. Sorry if it could sound selfish, but this is my real feeling at this point of my life.
In any case, thanks for being there and reply our messages in the air. Just to receive some sort of reply means the world to us.
Although I am not a beleiver I truly appreciate your prays.
May 16, 2019 at 1:34 PM #9193
Thank you for your response. I appreciate where you are – I took care of my mother the last 7 years of her life. It is very hard to watch them struggle and decline. A feeling for which I am just now finding peace after two years – I gained that peace from knowing I had done the best I could to care for her. My mom had rheumatoid arthritis which is a long, debilitating disease that finally claimed her physically & mentally. I know how frustrating it can be to not be able to make things better; to sit by and watch the deterioration both physically & mentally.
Know that I am here any time you need to release the frustration or need someone to listen!
May 17, 2019 at 4:17 AM #9202
How I can understand you! Also for relatives it is so hard to deal with the illness. Since my mum has the diagnosis, I took all medical decisions in my hands. It is a big help for here and for me it is important to have the opportunity to do it (I’m a nurse), but it is also a big responsibility. By the hysterectomy your mum had also removal of the lymph nodes? What kind of sarcoma has your mother? My mum is in stadium 3b (carcinosarcoma, the sarcoma is undifferentiated) and has finished the second cycle of Carbo/Taxol. After 4 cycles she will a CT-scan I’m so afraid that the tumor grows during the treatment. I contact a Prof. in Vienna to evaluate the option of Proton-Therapy us a adjuvant therapy, I’m still waiting for an answer. Maybe proton therapy would be an option for your mum, it gives more option then radiotherapy.
May 27, 2019 at 12:35 PM #9277
Dear Ann and Margret,
sorry if I have taken so long for me to respond your comments. I split my dailylife between my job and taking care of my mother, which doesn´t leave me much time nor energy to get online.
Thanks for your words Ann and really sorry for your mother´s disease. You are right when you say that it is horrible just to sit by and see them declining. You feel that it is so unfair that sometimes you just want to shout out loud all that frustration. At this point my mother is suffering more for the chemo´s side effects than for the horrible tumor. She is having vascular problems in her foot, and it is very painful. Honestly, it is desparing. We had more than enough with the bad perspectives,but this is too much to take on.
By reading your words I would like to believe that one day I will find peace and reconcile myself with life. For the moment I just feel myself immersed in an endless nightmare. But coming to this site and to the CSN site has help me a lot. Thank you.
Margret, I dunno what proton therapy is. By what I have googled it seems to be a sort of radiotherapy… I never heard of this in my country but maybe it is used and I don´t know. In any case my mother was rejected from radio/brachy for several reasons.
By the way, how is your mother at this point? Did she have her CT-scan? How is she feeling after the 4 rounds of chemo? It is very positive that you are a nurse, in that way you can help her with medication and alleviate her from surprising circumstances. I know this cause everytime my mother felt badly I called either a friend who is a doctor or another one that is a nurse. Without their advice everything would have seen even worse for her.
I hope that everything goes well for you and your mother. Keep yourself strong and keep us updated of your advancements, please.
A virtual hug for both of you and for all the great people who always reply in this indispensable forums.
May 30, 2019 at 3:24 PM #9309
We are here for you whenever you need a shoulder! Although it may seem like it, you are not on this journey alone!
June 7, 2019 at 1:20 AM #9397
Fortunately my mum is nearly no side effects of chemotherapy (Carboplatin and Taxol). Against neuropathy I think is good to split the monthly dose of Taxol in three doses, I give here also high does of Vitamin B complex. She will have the CT-scan in the middle of July. Proton therapy should be available in Spain since this year, see: https://www.foronuclear.org/es/el-experto-te-cuenta/122887-llega-a-espana-el-primer-centro-de-terapia-de-protones
I’m evaluating the possibility to have proton therapy us adjuvant therapy. If someone has more information about that can write me.
Dear Maria, I wish you and your mum a lot of strength!
A big hug from Switzerland Margret
July 7, 2019 at 10:33 AM #9733
Dear Magret and Ann,
Thanks a lot for your support and your words. And let me apologize for the laps of time between your comments and my answers. One of the things that have changed a lot in my life has been the feeling of time passing… I am not concious of how long has passed betweent one even and another. So, sorry.
On my side things have turned into worse and my mother has no treatment at all at this point. There is no prospect of anything in the near future either, even clinical trials. A couple of months ago she started to suffer some painful ulcers in one foot, we don´t know but probably due to problems with circulation cause by chemo, and they are healing extermmely slow. For this reason, the only “option” given by the oncologist was antigiogenics, but they have as a secondary effect the unhealing of wounds. Therefore they are not an option, at least for the moment.
I have tried also to search for clinical trials but, on two of them she has been rejected for not meeting the criteria, and in others I have found there is some chemo involved, which her health condition could not resist (she received a lot of chemo and radiation for a previous cancer).
To sum up, she has been considered a lost cause for doctors… And it make me feel terrible. Up to today I couldn´t tell her that there is not clinical trial available. I keep researching but I cannot hide my lack of hope.
Thanks a lot for sharing your stories and being there just for listening. It is something priceless.
Margret, how is your mum at this point? Please, let us know how things are evolving for her. Did she have the protontherapy? I checked the link you sent me but, as for now, any doctor has mentioned this kind of therapy.
Send you a huge hug to you and to every women and her relatives going through this cancer.
July 11, 2019 at 3:35 PM #9786
I wish I had some words to help & encourage you! It is a hard road!
July 17, 2019 at 11:22 AM #9899
just to be there and say hi makes a difference for me.
My beloved friends are helping me a lot, but having women like you who went through something similar encourage me more.
For the moment I keep searching for clinical trials here but there is no one for my mother at this moment. Sometimes I feel crazy because everyone push me to assimilate the inevitable… but it is so difficult.
An enormous hug for you, Ann
July 17, 2019 at 3:23 PM #9900
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.
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!
March 10, 2020 at 11:32 AM #10118
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
March 10, 2020 at 9:06 PM #10119KathyKeymaster
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)
March 11, 2020 at 2:05 PM #10120Charmaine CoimbraParticipant
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!
March 29, 2020 at 8:49 AM #10130
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.
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