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Would love some advice


#1

My bf was diagnosed in October 2013. It started as a small grape sized ball on his right elbow… He is not one to go to the dr so it continued to grow for about 6 months. It finally started to hurt so he agreed to go to the dr. Originally they thought it was a fatty tumor. After a biopsy it was confirmed as as. We were obviously devastated. He got cat scans and Mris and it was thought to have spread to his lungs and a possible bone met on his spine.

Fast forward to his time w dr Rosen at NYU… He was to undergo hi dose ifos. Not your typical hi dose but dr Rosens hi dose… Anyone that deals with this man knows that he is more aggressive than most. (And probably has a better grasp of this specific type of cancer as well) he had my bf go thru 5 cycles of this and threw in 1 round of cysplatin(spelling) and doxarubicin.

He was also skeptical about the bone met bc of the lack of SUV and the fact that it shows ‘healing’… As he explained cancer doesn’t ‘heal’. But to heir on the side of caution he gives my bf something to treat that as well.

Now it’s almost 10 months later and all of the mets on his lungs have disappeared. He handled the ifos magnificently. You can see that the dr was tickled by his response. He would giggle and say how my bf has better blood work while on this chemo than most people have who don’t have cancer. He claims to be going for the cure. From him, those are big words. He is not one to coddle or sugarcoat.

Here comes where I need some advice, now comes the part where we try to move on w our lives. We are both in our mid 30’s and want to have a family. Dr Rosen wants to put him on votrient. From posts I’ve read on here as well as other ‘internet research’ It seems that the drug works for a short period of time then when it no longer is working the disease seems to progress at a faster more aggressive rate. That’s scares me. Also my issue is that you don’t know if it’s actually working until it’s not working… Since my bf was able to handle that amount of chemo shouldn’t we wait to see if his body can combat it? Dr Rosen expects it to return, I’m no fool, I understand this cancer is known for that. But dr Rosen also has a plan for that… If they come back, cut them out. So wouldn’t it be better to wait to use this drug as a back up plan instead of a maintenance?

What would you do? These decisions never seem to get easier. There’s no room for error. I don’t want to sound selfish but I’m no spring chicken and I want kids more than anything. I lost my mother at a young age and yearn for that bond again. I’ve mentioned adoption or even sperm donor, he wants nothing to do w that.

I asked his nurse what she would do. I won’t name her but she is truly my angel. I have a love for her that I can’t describe. She has made this experience bearable. I don’t know how I would have made it through thus far without her. She said to me that if she were his mother she’d want him To do anything to save his life but if she were his wife she’d want to have his child so that g-d forbid anything shed always have a piece of him. Then she got a frog in her throat,started crying and immediately apologized for being unprofessional and walked out of the room. That pretty much summed up a difficult question and made it seem simple. But I can’t help but feel selfish for wanting that. So what do we do?

Side note( what do you suggest as a proper gift as a thank you for being such a big part of this process? And for being my strength and my calm and my voice of reason. I really want her to know how special she really is to us. )


#2

There is no data yet that shows whether votrient works as a maintenance therapy or not. Dr. Rosen expects it to work as gleevec did for GIST. It may or may not... How does your bf feel about this?


#3

This is what is so difficult with ss. Without proven paths for success, we must choose based on a hope, a prayer, and limited professional opinion. What does surgery potentially look like? How strong is his heart? Go with your head and your heart

It is hard to treat the as yet undetected. My spouse is in similar place, though did not tolerate chemo well first round. We also are trying to decide next steps.

As to gift, pick something that speaks to her unique qualities and how they helped you

I wish you both the best possible outcomes


#4

I was diagnosed back in 1992 when I was 30 and married only 4 years. (In the right elbow as well) Cancer changed my mind about having children and two years later my son was born followed by a daughter in 97. I remained cancer free for 15 years. I would not change my decision but my decision also had an effect on my children when the cancer came back.

It was tough on them. In the beginning my son needed to see a therapist at the age of 13 to deal with the possible loss of his dad. My son helped my daughter through it. Over the past 7 years, my cancer has come and gone through surgeries and votrient (effective 22 months - shrank the tumors entirely). I'm now in immune therapy.

My children now deal with my setbacks like pros. They have been taught about death and dying at an early age. They have a great outlook on life and know that it can change quickly, as a result they pursue life with a lot of gusto, but not all children react the same way.

I ask that you consider your children in your decision.


#5

Take care of the cancer. I would suggest a second opinion for a treatment plan. I have two daughters both born after my first diagnosis. I wouldn't change anything today but it was very hard on all of us when the cancer came back. And it will come back for most of us.


#6


Kadie said:

Prenez soin de le cancer. Je voudrais suggérer une deuxième opinion d'un plan de traitement. J'ai deux filles nés tous les deux après mon premier diagnostic. Je ne voudrais pas changer quoi que ce soit aujourd'hui, mais c'était très difficile pour nous tous quand le cancer est revenu. Et il va revenir pour la plupart d'entre nous.


#7

Très dur d’entendre ce commentaire. Est ce une réalité le retour du sarcome, même si 2 opérations semblent avoir tout enlever ?/>


Guillou said:




Kadie dit:

Prenez soin de le cancer. Je voudrais suggérer une deuxième opinion d’un plan de traitement. J’ai deux filles nés tous les deux après mon premier diagnostic. Je ne voudrais pas changer quoi que ce soit aujourd’hui, mais c’était très difficile pour nous tous quand le cancer est revenu. Et il va revenir pour la plupart d’entre nous.


#8


Elodie Espesset said:

There is no data yet that shows whether votrient works as a maintenance therapy or not. Dr. Rosen expects it to work as gleevec did for GIST. It may or may not... How does your bf feel about this?

I thank everyone for their responses. Elodie, he just doesn’t want to use all the tricks in dr. Rosens bag. The main thing is that you can’t tell if the drug is actually working… Only that it’s not working. Talk about tough decisions.


#9

To be honest with you, Dr. Rosen offered me the drug as a maintenance therapy too but I didn't take it either so I fully understand how he feels...

Sage said:



Elodie Espesset said:

There is no data yet that shows whether votrient works as a maintenance therapy or not. Dr. Rosen expects it to work as gleevec did for GIST. It may or may not... How does your bf feel about this?


I thank everyone for their responses. Elodie, he just doesn't want to use all the tricks in dr. Rosens bag. The main thing is that you can't tell if the drug is actually working... Only that it's not working. Talk about tough decisions.

#10

Our son(17) has been on votrient since last year July. First diagnosis (4 years ago)was 6 rounds of doxirubin and 7 rounds ifosformit and 33 rounds radiation. Last year it returned in his lung. He is on 400 mg and doing really everything you can think of. The higher dose was just not doable. (he is getting his white hair colored every 3 weeks) To much nausea and diarrhea. Same suggestion here from our doctor and many 2nd opinions. So far all scans have been clean. When it comes back, we got the same advise: remove the tumor and at the time we will have to see if there is another treatment available. What we learned is that your own instincts are the ones to follow. We got so many second opinions and it made it only harder to decide to stay on or off the chemo. (10 suggested chemo, 2 suggested to wait and see)

Side effect for our son on the votrient: (400mg)

diarrhea a couple of times a week

sometimes a little nausea

low appetite

white hair all over his body

low pigment, will easy get a sunburn

when he scratches himself, he will get bright red skin, what will go away after 30 minutes or so

75% energy level


#11

I thank you for all of that information. It is greatly appreciated.