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Horrible decision to make.

rmkbrad
Posts: 177
Joined: Dec 2009

I was presented a decision this week, quite taking the immunosuppressant’s and loose my transplanted kidney and go back on dialysis and let my immune system come back to full strength to help fight the cancer or take the risk that the cancer will kill me. I am coming to the terms that the life as I know will never be again, I have three young sons that I need to stay around to help raise. After 5 radiation treatments the only pain I feel is to my soul, I was lucky and spent only one year on dialysis and what a miserable year it was. The radiologist has treated other transplant recipients’ and told me that the ones on immunosuppressant’s had cancer come back 100%. I stayed down in San Francisco this week during treatment, I hate being away from my family, being by myself and dealing with all this. I am really scared.

Brad

Kent Cass's picture
Kent Cass
Posts: 1746
Joined: Nov 2009

Brad

Three young Sons- the only option rests with the matter of longevity, Brad, as being a Father to those Sons. Or so it seems to me. Love, Brad, as Father, but also as example each of those Sons will remember more than any other. Such, Brad, is the lot cast upon a Father. Our C road is most perilous, to be certain, and your's has the complication of the kidney; however, you must get the best opinion possible from your most trusted Dr., and then seek the answer to this large question within yourself- the best of answers, to you.

You are not really scared, Brad. You are seeking the answer(s). The Lord never gives us more than we can handle. For those of us who are given more- so much more- than for others to have to deal with= reckon that means the Lord knows we have the strength, within, to handle it. Albeit a backhanded way, my friend, I do reckon the Lord knows what you are made of, and has a great respect for it. Strength and Honor, Brad, as man, and Father. You really aren't scared, Brad- you are only seeking the answer to a question. A very large question. The first order of business is getting the best opinion possible on the best option, and then factoring that into your life. None of us can have that answer. It is your's, Brad. Just keep in mind that in the eyes of your Sons- you are Giant, in every way to them... And, all of us are with you.

A Beckon Call- all Prayers. I know Hondo and I are with you, Brad, and if we are with you= all of us are with you. The answer you find will be the best answer.

Believe

kcass

micktissue's picture
micktissue
Posts: 432
Joined: Dec 2009

I'm sorry you are alone with this Brad. When my brother was in treatment for lymphoma he was faced with a similar circumstance. He let his wife and kids make the decision. Was his quality of life (short term or not) worth the risk of the cancer returning.

They chose the aggressive approach to get as much life, good or bad, as they could. I don't know how old your boys are or if they could understand this, but your wife probably has a handle on it. My brother is 20+ years from Dx. He has good and bad days, but he's not unhappy with the decision. His motto is 'every day is a good day even when it sucks'.

I have no idea if this is helpful, and I am feeling for you right now. Are you at UCSF? These is a very good MFT there you might want to connect with. She leads a group but also does individuals. I can get the contact info if you need.

Best,

Mick

Hondo's picture
Hondo
Posts: 5608
Joined: Apr 2009

Very hard decision to make, but like Kent said there will be many who will be praying for you, so whatever decision you make my friend I pray it will be the right one for you. I have seen many things in my life that could only be called a miracle, and I believe they happen for all people Brad.

Pam M's picture
Pam M
Posts: 2194
Joined: Nov 2009

Brad,

Very sorry to hear of this development. You know that whatever you come up with, you've got all of us pulling for you. I'm sure there are lots of times alone in San Francisco when it won't mean a thing, but we are in your corner.

Tanager75
Posts: 86
Joined: Aug 2009

What a horrible choice to have to make. I will keep you in my thoughts. I know the fear I experienced/experience is related to the future mostly. I try hard to keep it a day at a time. Some days my faith (opposite of fear ?) is better then others. I hope you are able to find answers to your needs in the upcoming days.

Peace,

mark

sweetblood22's picture
sweetblood22
Posts: 3230
Joined: Jan 2010

i am so sorry that you are away from your family at this time. i can only offer you prayer and friendship. it is never easy to make these types of gut wrenching decisions that will change our lives and the lives of those we love. i do not have children, one of my gut wrenching decisions which i can say i do not regret, but at the same time, my actions and decisions now do not affect someone who counts on my complete care and guidence. i cannot say i know how that would feel.

all i can say is that when i have been faced with such struggles, i get as informed as i can. seeking out medical experts, spiritual guidence, my family, and talk talk talk about my options, and then pray. these things are never easy. have courage and faith, and find strength in your family to help you make your decision.

wishing you peace.

HeartofSoul's picture
HeartofSoul
Posts: 732
Joined: Dec 2009

I have been down a very similar road as you Brad but it didnt involve my kidney.

I was diagnosed in 1977 with type 1 diabetes at age 20 and in April of 2001, I was added on the UNOS waiting list to receive a pancreas from a donor. In June 2001, I was called to the Univ of Minn to have the pancreas transplant from the donor so I could become insulin independent. After 5 days, I lost the transplanted pancreas due to a blood clot, had surgery to remove it and went back home to Calif still a diabetic. In Feb 2004 I was listed a second time at the UCSF in San Francisco to receive another pancreas and was called by UCSF to have surgery for the transplant of the pancreas in June 2004. This time it worked and I was on prograf, cellcept and rapamune, all immuno meds for the new pancreas.

Fast forward to Feb 2008. I was diagnosed with cancer and had surgery to remove the tumor in March of 2008 but did not need further treatment as the cancer did not spread to the lymph nodes. In Sept of 2008, I had a cat scan as a follow up and this time the cancer returned and met to my lymph nodes and lungs and was heading toward the liver. Before I began several rounds of chemo treatment in Oct 2008, decisions had to be made about the immuno meds I was on for my transplanted pancreas by both the UCSF transplant team and my medical oncologist in Orange County in Southern Calif.

My transplant team at UCSF said to stop immuno meds during chemo treatment but my med oncologist (and with my input too) went ahead and stayed on the immuno meds during treatment.
There were 2 schools of thought from my medical transplant teams at UCSF and local Med oncologist. My UCSF transplant team put the cancer treatment first and advised I get off rej meds even though it risked the loss of my pancreas because they were concerned that with both chemo and rej meds, my WBC would drop too low and I would have to stop chemo treatments. (this would reduce the effectiveness of chemo on cancer.) My med oncologist saw that I could get chemo and stay on immuno meds during treatment and if my WBC got low, I could get neupogen to raise the WBC level as needed and not miss scheduled chemo treatments.

As it turned out, I didn’t miss chemo treatments and remained on immuno meds throughout duration of treatments but what I did was reduce my immuno meds by approx 50% during chemo.
After my cancer went into remission in Jan 2009, I stayed with the reduced immuno meds and to this day, my cancer has stayed in remission and my transplanted pancreas is working fine.

Now comes the real interesting part. After I completed chemo in Jan 2009, my med oncologist recommended that I get off the anti rejection meds as he was concerned the cancer may come back. I had given it some thought but wanted to remain on the immuno meds.

My transplant surgeon at UCSF believed the cancer could have come from the prograf (anti rejection med for transplant pancreas) I had been taking for 5 yrs and my med onc leaned this way too but he went one step further. He called the world’s most respected med onc at Univ of Indiana and asked him if the immuno meds I was taking for xp organ contributed to my cancer. Well, the Dr said he didn’t feel they did and after I heard this, I stayed with my immuno meds and to this day, still do. The med onc at Univ of Indiana who my local med onc called was the one who discovered the chemo back in 1974 to treat the type of cancer I had so I took that into consideration in my decision.

Brad, your situation is even more difficult because by getting off the anti rejection meds, it means loss of kidney and dialysis. My understanding is if you remain on anti rej meds during rad treatments, your WBC count would fall to levels that may jeopardize your cancer treatment. Have you used neupogen during your rad treatments to elevate your WBC and if so, how effective was it? If you are not on anti rej meds during cancer treatments, your kidney may survive because the rad treatments would normally target and reduce your WBC and T cells which typically target your transplanted kidney. The real dilemma is after your cancer is treated and in remission and you’re done with rads/chemo, if you were to use anti rejection meds for your transplanted kidney, the chances of either the cancer you had treated or a new type of cancer could develop again and return and that may be too big a risk to take.

Brad there are no simple answers and im sure the decision you make will take into account your medical teams advice, your family's feelings, your own health, your tolerance for risk, and your peace of mind. If there is anything i can do to help, please do not hesitate to let me know.

Steve 'Heart of Soul'

stevenl's picture
stevenl
Posts: 587
Joined: Jan 2010

Hey Brad,

I was worried about you not having heard from you all week. Like others who have posted I do not know the ages of your children but I personally am blessed that I have been here longer for my kids than my parents were for me. I have 3 daughters that range in age from 31 to 27. My parents died one year apart when I was 26. I still miss them. That was 27 years ago. When I first found out I had cancer, every decision I made at first was about QUALITY of life. That quickly changed. I also have 5 grandchildren and one due in April. I think these little ones are what changed my mind. Now granted, I was not facing any challenge like you are, but man I think you just gotta choose life. You said it was miserable in dialysis and I believe you, but the pain in your soul is for your kids. I can not express the anguish I feel for you, with the decision ahead of you. I will be praying for you and your family.

Bless you Brad,
Steve

rmkbrad
Posts: 177
Joined: Dec 2009

My boys are 11, 6, and 3. I am 44, I waited to have kids, Navy, College and then I needed to grow up myself and be able to be the father that I thought a child would need. I am envolved in all their activities and support them in any way we can. My thought with the meds is if the rads and chemo suppress my immune system, hopefully my kidney will make it through, I have been on dialysis once and if I have to do it again I will be able to see my kids grow up one more day at a time. With the stem cell research bill signed I can hope somthing will come about in my lifetime that will help me and those millions of people on dialysis. I have not had internet while in SF but will get a new phone while I at home this weekend. Thanks for all your input.

Brad

Fire34
Posts: 350
Joined: Feb 2010

Brad
Everyone else has pretty much summed it up. You are in my prayers also. I feel your pain being away from family, as I had a very depressing week in week 4 of my treatment. Again prayers be with you
Dave

HeartofSoul's picture
HeartofSoul
Posts: 732
Joined: Dec 2009

Once you are treated for your cancer and hopefully goes into remission, how long before you can qualify again by being listed on the UNOS transplant waiting list for another kidney?

How long does the cancer need to be in remission before getting that 2nd opportunity at a kidney either thur a cadaver or thru a living donor such as family or friend?

rmkbrad
Posts: 177
Joined: Dec 2009

I told the doctors that I have two brothers that are a match, my first was a cadaveric. They did not seem to ashured that it would happen again. Back on immune suppresants and maybe cancer again. Still alot of questions to answer, I really like your story, it gives me hope. Thanks again and my prayers go out to all that are going through this.

Brad

MarineE5
Posts: 744
Joined: Dec 2005

Brad, I read your post last night, and I just couldn't reply. I just sat there, numb.

I have no words of wisdom to add today. But, you already have been sent some sound advice by the members above. The only thing that I can do is to include you and your family in my Prayers and hope that whatever decision you make is the one best for you and your Loved ones.

My Best to You and Your Family

delnative's picture
delnative
Posts: 452
Joined: Aug 2009

... except that prayers are headed your way.
God be with you and yours.

--Jim in Delaware

HeartofSoul's picture
HeartofSoul
Posts: 732
Joined: Dec 2009

Brad, you had mentioned your radiologist has treated other transplant recipients’ and told me that the ones on immunosuppressant’s had cancer come back 100%

When I applied for my 2 pancreas organ transplants, one in 2001 at Univ of Minn and the second in 2004 at UCSF. I had an opportunity to get my answers from both a Dr consulataion with a transplant surgeon and and written reports by those medical centers on the chances of developing cancer after taking immuno suppressant meds as prograf, cellcept, rapamune and prednizone.

I was also curious to research what other studies showed and have some references below:

http://www.ucsf.edu/science-cafe/articles/skin-cancer-hidden-risk-for-transplant-patients/
speaks mainly of of squamous cell carcinoma

http://www.biomedcentral.com/1471-2407/9/294

Cardiovascular illnesses and neoplasms are the two main causes of death with normal function of the graft in the long-term follow-up of patients who have received kidney transplants. The Australian-New Zealand register even suggests that the second factor could be growing at a faster rate than the first. The presence of neoplasms (cancer) is a major threat and cause of morbidity in kidney transplant patients.

According to data published in other countries, the accumulated incidence of neoplasms can reach 20% 10 years from the transplant and nearly 30% after 20 years. The rate of expected cancers compared to those which are observed varies in the different registers. On average, it is estimated that the incidence of cancer in patients who have received kidney transplants is 3 times higher than that for the general population. By localizations, this ratio can reach an incidence rate of between 8 and 14 times more for kidney cancer in transplant patients, and an incidence of between 65 and 92 times more of non-melanoma skin tumours. In the largest study on the incidence rates of malignancies among first-time recipients of deceased or living donor kidney transplantation (n = 35765) the rates for most malignancies are higher after kidney transplantation compared with the general population. Similar results were observed in studies from five national tumour registries in Denmark, Finland, Sweden, Australia, and Canada with a total sample size of 31,977 transplant recipients.

Several factors may influence in the pathogenesis of tumours after transplantation: chronic uraemic status, cumulative exposure to immunosupression, and certain drugs which can be carcinogenic through independent mechanisms or as a result of immunosupression and viral infections. Some authors suggest that immune deficiency, rather than other risk factors for cancer, is responsible for the increased risk.

Squamous cell cancer of the skin affects about 30 percent of kidney transplant patients after ten years of immunosuppression,"

Also refer to link below

http://www.newscientist.com/article/dn10818-kidney-transplants-linked-to-tripled-risk-of-cancers.html

People who have had a kidney transplant are three times more likely to develop any of a wide range of cancers, a new study finds.

The researchers think immune-suppressing drugs taken by the patients are to blame. The results also suggest that, in the general population, viruses may cause more cancers than previously believed.

Claire Vajdic at the University of New South Wales in Sydney, Australia, and colleagues looked at cancer rates in more than 28,000 patients before and after they received a kidney transplant.

It was already known that transplantation increases the risk of three cancers: non-melanoma skin cancer, non-Hodgkin lymphoma and Kaposi sarcoma.

But the team found that after a kidney transplant, cancer rates at 25 sites in the body increased significantly, compared to what would be expected in the general population. For 18 of the sites - including the tongue, penis, eye and nasal cavity - the increased risk was threefold or more.

Leukaemia boost
The discovery "strongly suggests a role for the immune system in the prevention of cancer at a much broader range of sites than we had previously believed", says Vajdic, who believes the immune-suppressing drugs led to the rise in tumours.

Viruses are known to be linked to some cancers, including cervical cancer, which is caused by the human papillomavirus. The researchers also found increased rates of post-transplant cancer at four sites for which a link to HPV has been suggested, including the eye and the oesophagus, suggesting that HPV vaccines may prevent more types of cancer than had been hoped.

For some of the other cancers, such as leukaemia, researchers have suggested that a virus or other infection might possibly be involved. The increased rate of leukaemia seen in the study participants after transplantation supports this theory, Vajdic says.

Sunlight exposure
On the other hand, the team found no post-transplant increase in breast or prostate cancers, indicating, contrary to some suggestions, that viruses or other infections may not be a cause of these cancers.

But for at least one of the cancers highlighted in the study, there is every reason to believe a virus is not blame. The team found an increased risk for melanoma of the skin, which is clearly associated with exposure to sunlight but not with any infection. It is possible that a depressed immune system could somehow interact with sun exposure to increase the melanoma risk, Vajdic speculates.

Patients with kidney failure are four times more likely to die if they stay on dialysis than if they have a transplant, so the work does not mean that patients should reconsider a transplant, Vajdic stresses.

Nevertheless patients should be on high alert for any warning signs of cancer. And in the meantime, researchers are working on immune-suppressing drugs that should not increase the cancer risk, she says.

ratface's picture
ratface
Posts: 1232
Joined: Aug 2009

I am sorry that life has thrown so much at you and will be thinking of you. Is there any chance that if you choose to give up the kidney that it can be salvaged for someone else and dose that earn any consideration in the donor list scheme of things for you down the road. Just looking for a silver lining. May you be guided to the right choice.

rmkbrad
Posts: 177
Joined: Dec 2009

They, the doctors decided to try to save my kidney, sort of. They put me on a different antirejection med that also helps fight cancer, and are using the chemo as an immunosupresant. Tried the Taxol and had an alergic reaction to it, so they gave me the carboplatin and it was ok, but now I cannot sleep. My mind is going all the time, like I drank a pot of coffee and am on some cafine high. I need good sleep. No more taste of food after two weeks radiation, I am making myself eat though, only lost 5 pound in two weeks. I have a little saliva left, but up here in Nevada with the dry climate I notice that my mouth dries up alot faster than down in the bay area. 4 more chemos and 5 weeks of radiation to go.

Brad

stevenl's picture
stevenl
Posts: 587
Joined: Jan 2010

Hey Brad,

Its good to hear from you. I'm glad they may have found a way around all the problems. I don't know if you tried but I got the docs to give me some sleeping pills. I would not sleep without them, I know. I have 11 treatments left and am doing OK so far. Hang in there you can and will make it.

Thoughts and Prayers,
Steve

D Lewis's picture
D Lewis
Posts: 1518
Joined: Jan 2010

Brad;

I'm glad the doctors are going to at least try to save your kidney. I hope they succeed. Sounds like you and I remain on parallel paths. I'm on cisplatin rather than carboplatin, and I did notice that the anti-nausea meds made me jangled and nervous, and it was hard to sleep. I only get two more rounds of chemo, so I'm going to try to tough it out, but you might mention the nerves to your doctor. Maybe they can prescribe something. I have six weeks of radiation to go, taste and saliva just about gone, subsisting mostly on a cold liquid diet of smoothies and shakes. Lost one pound in week 1, and I know I lost some this week; my face is thinner. My doctor also put me on Nexium, which has taken care of the bad acid reflux I got from both the chemo and rads. I believe it has made it easier for me to eat and has helped my gag reflex.

My thoughts are with you as we slowly work our way through this process. We will succeed.

warmly,

Deb L.

Kent Cass's picture
Kent Cass
Posts: 1746
Joined: Nov 2009

Excelllent to hear y'all are dealing well with your treatments, and the infamous side-effects/complications. Not an easy road, my friends- but a road you can reach the end of with success. Excellent.

As for sleep- I was doing good to get more than 3 hours/sleep, though I think I mighta got more than 4 a couple times. And, of course, napped for 1+-hour every afternoon. My Dr. had me on Xanax, but I never took more than a 1/2-tab at a time, and seems I tried that before bed in the non-Morph times. In a way, because of the mucous build-up thing, it might be okay to not have lengthy sleeps, so you can hack/spit/clean-out the respiratory tracts more often. Still, you do need your sleep, and talking to your Drs. about it seems a good idea.

kcass

HeartofSoul's picture
HeartofSoul
Posts: 732
Joined: Dec 2009

Brad, the different antirejection med your on now that also helps fight cancer, would that be rapamune? I take it daily for 6 yrs now and i beleive it has a anti cancer mechanism in it

Heart of Soul

rmkbrad
Posts: 177
Joined: Dec 2009

Yes that is the drug I am on now, any problems with it so far. I wish they would have put me on it along time ago and I could have avoided this whole thing. Only two weeks in and one chemo and I am having a really hard time eating, vomiting everything. I am just getting ready to go back down to San Francisco, I really hate going back down there. Enough wineing for now.

Brad

CajunEagle
Posts: 353
Joined: Oct 2009

just be sure to wear some flowers in your hair. :)

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