Disease Free

[muddypelican]

I just wanted to write a quick post and thank everyone here for abundant and useful information and support found here. I have only posted a few times, but I have spent many hours on this site, and have learned a ton. We found out a few days ago that my boyfriends follow up CT scan came back "Disease Free" after his 3xBEP. His oncologist had only recommended 2xBEP, but after all I read here, I followed your advice and contacted Dr Einhorn who recommended 3 rounds instead of 2. There's no way to know if the two would have worked, but I am so happy to have done the 3 and now have the all clear.

Thanks again for your efforts here, you likely have no idea how many people you have helped.

Patti

[Already Bald]

Terrific!!

[Mom]

That is so nice to hear. So now go enjoy the rest of your life with him, Patti!!

[Scott]

We found out a few days ago that my boyfriends follow up CT scan came back "Disease Free" after his 3xBEP.

Congratulations, Patti! Some people call that "Club NED" (No Evidence of Disease). It's great to hear things are going well!

[boyce]

Awesome!


Yes Yes Yes Yes Yes!

Another battle tested warrior!!

WOnderful and inspiring news for all of us.

[RTC]

Congratulations! great news!

[RTC]

Congratulations! great news!

Yes yes people on this forum are truly great and all the information
They information, suggestions and support they provide help me greatly!

[Russell's Mom]

Love reading the good news!!! thanks Sharon

[Jay68442]

That's wonderful. I love hearing those words.

[muddypelican]

continuation

Even with this wonderful good news, we still have battles to fight, for instance, is there any input on how long these chemo side effects linger? Matt still gets naeous, still gets neuorapothy, still is anxious, still has feelings of failure due to his disease that he cannot control. Nothing I say or do can fix this for him.

Also besides his physical side effects, there are emotional ones that are different from mine as a caregiver. Upon hearing the all clear a weight was lifted for me, and a sense of righteousness, that I had helped him through this, that we are done. I also felt that we are not done, and that my feelings of being done can never equal that of his that petrify him, thinking that this will never be done. I know in my heart that he has been healed and that this experience, while so hard, will change him for the better, but he is not there yet. He has a few years of tests and each one will bring back the same fear, and each time I feel I will not be able to truly comfort him, as the caregivers truly never know the fear the patient knows, and we are lucky not to, but from the heart, any one of us would take your treatment, your ordeal, or your healing on ourselves any day of the week. You all show so much strength and resistance, I am grateful that I can be of some assistance to such a strong group of people.

[Fed]

Patti,

First off, let me say that I am really happy for you and your boyfriend's all clear. It is always great to hear that another one of our brothers is well on his way to being rid of this monster.

I do want to address your post on the non-physical effects of the disease. Cancer, unfortunately, not only affects cells, organs, or other anatomical structures. Cancer has a knack of, putting it in uncensorable terms, screwing with one's head. Those effects, unlike the physical ones, are very unpredictable. I will give you a very personal example. I am a cancer biologist, and my work is focused on understanding what makes cancer tick. Conventional wisdom would make you think that such knowledge, understanding the enemy, if you will, would be helpful. If that was supposed to be the solution, then why was I struggling with the fear before labs or facing the reality that I had something that, if left untreated, could have been disastrous to me, but most importantly, to my family? My wife has dealt with two of her grandparents succumbing to cancer and her Dad recently surviving a bout with melanoma, not to mention my family losing Abuelita to a long battle with breast cancer and then having one of the younger members of the family facing TC.

These fears are very real, and while they are mitigated by the passing of time, they are something every single cancer patient has to deal with. Gandalf (yes, from The Lord of the Rings) said very wisely after Frodo Baggins laments having to deal with the burden of carrying the One Ring and wishes it had never happened to him, "So do all who see such times, but that is not for them to decide -all we have to decide is what to do with the time that is given us." This comes from a work of fiction, but the idea could not be more real.

I guess what I am trying to say is that we all deal with this in our own way. My wife struggles with this, but I keep telling her that I don't expect her to understand this -and I don't want her to... truly the only way to really understand it is if you have gone through it, and I hope to God she never has to. Suffice it to say, the fact that your boyfriend has an all-clear is a great start. Everything will come in time. Rest assured that your support is coming in handy, and like all of us who have had exemplary caregivers, he is extremely lucky to have you by his side.

Stay strong. You both have made it through the physical stuff. You will make it through the mental muck, too .

[dadmo]

Patti:
The physical side effects of the drugs will fade long before the mental side effects of being told you have cancer.

[DennyD]

Even with this wonderful good news, we still have battles to fight, for instance, is there any input on how long these chemo side effects linger? Matt still gets naeous, still gets neuorapothy, still is anxious, still has feelings of failure due to his disease that he cannot control. Nothing I say or do can fix this for him.

Also besides his physical side effects, there are emotional ones that are different from mine as a caregiver. Upon hearing the all clear a weight was lifted for me, and a sense of righteousness, that I had helped him through this, that we are done. I also felt that we are not done, and that my feelings of being done can never equal that of his that petrify him, thinking that this will never be done. I know in my heart that he has been healed and that this experience, while so hard, will change him for the better, but he is not there yet. He has a few years of tests and each one will bring back the same fear, and each time I feel I will not be able to truly comfort him, as the caregivers truly never know the fear the patient knows, and we are lucky not to, but from the heart, any one of us would take your treatment, your ordeal, or your healing on ourselves any day of the week. You all show so much strength and resistance, I am grateful that I can be of some assistance to such a strong group of people.

M.P ,

This is a subject that comes up for all of us that have delt with this DISEASE called cancer. It is a frightening word. One can call it what they want, but it is still a disease. For too many people, the word cancer was associated with death, For many, it still is. The emotional aspect of it is very real, and also needs to be treated.

As with any traumatic situation there is a process of working through them. With a disease the usually strikes young men, there are other issues that may be more bothersome.

As with Aaron, he experienced the same things as you describe. They are entirely normal to those who experience this. It is also normal for caregivers to "wish they could do more". Reading thru your posts, you have done more than your share, and one can see from this wonderful post that you would walk through fire to help this be different for him.

Having been on just about everyside of this disease, from a caregiver ( 3 times) to my own scares, one thing we were actually discussing the other day was the one thing that will help many in this situation, but rarely discussed on this site. That would be cancer support groups, and survivor support groups. Why that is not mentioned here, and promoted, we think is something that is lacking in the "total" recovery from this disease.

One young man who wrote us, brought this very subject up to us in an e-mail recently. He too was worried that the emotional scars, and the fear of " did my treatment work" ? Our suggestion was to seek a cancer support group. It is a well documented fact that those in treatment do better when they are attending a cancer support group, than those who don't. It also is well documented fact that those who attend a cancer support group, tend to recover emtionally, much faster than those who don't. This young man did attend, and I doubt he will ever miss one. He has found a "home" away from home. He expressed that he can now share his fear with his wife, and they have reached another level of their relationship as he has learned the tools and his own trust to share them.

Live support groups really puts things into perspective as to the experience of what one goes through, compared to your experience as a care giver, and the same for a boyfriend compared to what others are going thru in wanting to discuss his fears... This is nothing better than having goup of people who are experiencing the same things sharing their experiences. Sure, these boards are a step, but nothing can be matched in regards to putting things in perspective , face to face. That is why there are 1,000's of them held everyday, in every state, and every city. To each his own, but we cannot understand why this is rarely mentioned on this site.It is a mainstay of recovery of any cancer.

Due to the nature of this disease, there are aspects that really "hit " at the core of what one thinks defines a "man" . It has been the experience of Aaron and I in talking with many men who have experienced this disease, that tell us all the time " I just can't talk about this with my parents, or my wife, or girlfriend.They don't understand". The truth is, they probably don't. I know that Nan has things that bother her regarding her experience with cancer 2 x, and while I appreciate her issues, I dont evern think at all that the things that bother her, are an issue for me. I didn't fall in love with her because of her breasts. but sometimes she is afraid i wont love her because of them or the scars. I love her even more because of them. Her support group has gone a lone way to help HER resolve those issues. Being in a room with others who face the same issue gives a certain confidence, or even courage to open up to these issues, and opens the door to having the courage to talk about this with loved ones, family, and others in their lives. Once that door is opened, usually it begins the process of great growth and appreciation for life, because of this experience. The "monster "becames a teacher.

It also has been my experience with Aaron in helping others, that many men will get stuck in the "rut" of what if, that can easily take over their lives. I know guys that are 5-6 7 years out of treatment who's constant fear is that the cancer is coming back. I know other who are depressed. I appreciate the fears, but ultimatey, did one fight thier disease only to live in fear?

You cant make him go seek a support goup, but you can go, and it will help you understand what you are going thru, that you did everything and more than one could ask in being supportive, and maybe help him feel that it would be good that he might try one. Or Aaron and I would be more than happy to help by sharing our experiences, and what a support group did for us. There are some really great ones in Pittsburg. Be glad to forward you a list.

None of our business, but I sure wish that this site would promote these groups. Anyone who has ever attended one, will I am sure, be happy to explain how great, meaningful, and helpful to the total recovery they can Be.

It's why I attend Church. My spirit is with me everyday, but to be together as a group, at a certain time, every week, shows the collective powers of a group for a common goal.

If he would like to Aaron or I, or anyone else that has expereinced a Live support group, I am sure you will find that can be helpful.

Please understand that we are not saying online support groups such as this are not good, as they certainly are. There is just something different about being there, in person, knowing that those there are right with you, and you can look in their eyes, and see they understand. They are very powerful.

The idea that it will just will work out , in our experience, is a false hope. More likely, it will just become buried. I have seen many posts in here that say " still think abiut what if , I still worry... " statements like those show some still have some residual fear. . Like cancer, they can grow into other things.

You have been great for him, and please extend our offer of speaking to to others who have been through this.

Dennis

[Scott]

None of our business, but I sure wish that this site would promote these groups.

Dennis, sure it's your business! This site is here for its members.