Dealing with recourrence and lack of treatments

GCS Project Home Forum Share Your Story Dealing with recourrence and lack of treatments

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    • #8531
      María Santamaría
      Participant

      Dear all,
      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.

    • #8535
      ann
      Participant

      Maria,

      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!

      Ann

    • #8549
      Kathy
      Keymaster

      Hi Maria,

      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,
      Kathy

    • #8565
      Lisa Myers
      Participant

      Maria,
      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!

    • #9172
      María Santamaría
      Participant

      Dear ladies,

      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.

      • #10080
        Charmaine Coimbra
        Participant

        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!

    • #9174
      ann
      Participant

      Dear Maria,

      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!

      Ann

    • #9192
      María Santamaría
      Participant

      Dear Ann,

      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.

      Love

    • #9193
      ann
      Participant

      Maria,

      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!

      Ann

    • #9202
      Margret Riboch
      Participant

      Dera Maria
      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.

    • #9277
      María Santamaría
      Participant

      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.

    • #9309
      ann
      Participant

      Maria,

      We are here for you whenever you need a shoulder! Although it may seem like it, you are not on this journey alone!

      Ann

    • #9397
      Margret Riboch
      Participant

      Dear Maria
      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

    • #9733
      María Santamaría
      Participant

      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.

    • #9786
      ann
      Participant

      Maria,

      I wish I had some words to help & encourage you! It is a hard road!

      Ann

    • #9899
      María Santamaría
      Participant

      Hello Ann,

      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

    • #9900
      Margret Riboch
      Participant

      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

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