Has anyone had any experience with this? Would you please share with me?
Many thanks.
I had a stem cell transplant at the University of Iowa Hospital in January 2014. Starting in June, 2014 I began 52 weeks of chemotherapy. I will be finished with all treatment in 11 more weeks.
According to various blood tests I do not have Amyloidosis now and am expected to make a full recovery. Because of the 52 weeks of chemotherapy it is very unlikely that this disease will return.
Hi BJ, I am the facilitator of the support group meetings held at Duke and in Charlotte. Sorry to say that you missed our Durham meeting by about a month and our Charlotte meeting is not until November! Please rest assured that you are in good hands with Dr. Tuchman and I have no doubt that you will receive excellent care from him. I can put you in contact with the wives of two male patients that had SCT's at Duke. They are both quite knowledgeable and would be able to answer your questions. Email me privately at ■■■■■■■■■■■■■■■■■■■■■ and I will get you connected with these two wonderful ladies. The type of amyloidosis that I have is not treated with SCT so I can't really give you any first hand experience on SCT. I suggest that you go to www.amyloidaware.com and watch the video and read the awareness booklet. Both will help you understand the disease a bit better.
Paula Schmitt
Hi Ezra, Did you have any response at all to the transplant and what chemo do they have you on for a year? That seems really excessive.
Ezra said:
I had a stem cell transplant at the University of Iowa Hospital in January 2014. Starting in June, 2014 I began 52 weeks of chemotherapy. I will be finished with all treatment in 11 more weeks.
According to various blood tests I do not have Amyloidosis now and am expected to make a full recovery. Because of the 52 weeks of chemotherapy it is very unlikely that this disease will return.
The chemo that I''m on is the same that everybody is getting: Dex, Velcade and Cyclophosphamde.
I have noticed that there are two basic philosophies for the treatment of Amyloidosis: one treatment is either just chemo or a stem cell transplant with very little chemo follow up and the other is what I've gone through: SCT followed up by a year of maintenance chemo. I have observed, mostly from stories posted on this site, that those patients who do not have a year of chemo maintenance face a substantial risk of the disease returning within six years.
There are clearly two different philosophies (one may be called the 'Mayo protocol' which does not involve a year of chemo maintenance). Again, it appears that those going through Mayo sometimes have the disease return after a number of years.
Because of the year of chemo maintenance I have been told that, "I will not die from Amyloidosis." And that's about it. I'm 60 years old. I will probably live another 18 years or so and in that time Amyloidosis will not return. However, it would probably return if I lived another 30 years. There really is no cure for Amyloidosis. It's just a matter of 'tamping it down' so you get to die from something else.
ga_peach said:
Hi Ezra, Did you have any response at all to the transplant and what chemo do they have you on for a year? That seems really excessive.
Ezra said:I had a stem cell transplant at the University of Iowa Hospital in January 2014. Starting in June, 2014 I began 52 weeks of chemotherapy. I will be finished with all treatment in 11 more weeks.
According to various blood tests I do not have Amyloidosis now and am expected to make a full recovery. Because of the 52 weeks of chemotherapy it is very unlikely that this disease will return.
Since I am just beginning this journey, I wonder if it's appropriate to ask about cost of the STC and chemotherapy? I do still have a job--at least for now--and fairly good health coverage. It covers generic drugs very well, but doesn't do so well on the name brand items. I apologize if this question is out of place, but I am planning to get married in May and don't want to blindside my fiancé with expenses we don't expect.
I would also like to know about the actual experience of STC. Did you have to stay isolated the whole time? Did you suffer a lot of side effects from the meds? What can I expect?
Thanks for any replies.
I am alive today because of the ACA (ObamaCare). I was diagnosed, first, with Stage III kidney failure. This kept me from getting any health insurance (pre-existing condition). Thanks to the ACA I was able to get insurance and a SCT. The cost of the SCT, paid for by my insurance, was probably >$300,000.
I was hospitalized, in isolation, for 32 days. I've had pneumonia twice, various bacterial infections and the flu while my immune system was rebuilding itself.
The chemo drugs have hit me pretty hard (as they do many people). They say everybody handles them differently, but, chemo is poison and your body doesn't like it. I've had all the usual side--effects from chemo (hair loss, feeling awful, lethargy, etc., etc.).
Pretty sure that Duke does their SCT’s on an outpatient basis. The ladies that I am putting you in contact with will be able to tell you about it. All of the major Amyloidosis Centers do the transplants outpatient because hospitals are germy places and you are better off at home or in a hotel. You will most likely have to go to the hospital each day to be monitored but once you are past a certain point you won’t have to come in as often. As for your costs, that will depend on your insurance policy. Keep in mind that you should have an out of pocket maximum for the year and once that is met, your costs should be zero for the remainder of the year. I suggest that you track your mileage, parking fees, etc. that are related to your treatment. It is all tax deductible and you would be amazed how fast it can add up. Be sure to save your parking receipts from the deck! Has Dr. Tuchman told you that you are indeed eligible for transplant?
Paula
I will see Dr. Tuchman on Thursday. Dr. Smith, my nephrologist at Duke working with Dr. Tuchman first mentioned the SC and said I would likely have one, I guess I'll know for sure on Thursday. I'll have to start saving the parking receipts now. I didn't realize that earlier.
Please tell him I said hello! At our recent Duke support group meeting some of his patients showed up in "Team Tuchman"
t shirts that they had printed up on their own. He is well loved by his patients and I think you will like him as well.
Paula
Hi BJ,
I had a SCT on 12/12/12, following 5 months of velcade. I had very little personal expense with my chemo and SCT. I am employed full-time and have good health care. However, due to ACA, things have changed with health insurances. I now seem to be paying 90% of all charges. So, before, when I paid nothing for an IVIG treatment, I now pay $453 for the same treatment. I have not had chemo under the new policy but will be doing so this summer. I will soon find out what my co-pay is for the treatments. But, my SCT was about $70K so even if I had to pay 10%, it would be $7K which is not inexpensive but could be manageable. The key is these things keep us alive so I will do whatever I have to do to get them. Please feel free to ask me any questions regarding any part of this treatment. I have dealing with this for a number of years now and I have gotten pretty good at managing all parts of it:)
Paula, I passed your greetings along to Dr. Tuchman. He just beamed!
Bonnie
ga_peach said:
Please tell him I said hello! At our recent Duke support group meeting some of his patients showed up in "Team Tuchman"
t shirts that they had printed up on their own. He is well loved by his patients and I think you will like him as well.
Paula
Isn’t he just the sweetest man. I was very impressed with the answers he gave at our meeting and I truly do trust his ability to treat you correctly. I would be the first to tell you if I thought you should go elsewhere.
I think I lucked into the best situation possible for our circumstances. Dr. Tuchman came in the door that first day, and somehow I felt myself switch from “I’ll never make it out of this” to “I will kick this disease on the butt!” Somehow, Dr. Tuchman just instilled a huge dose of confidence in me from the first time I saw him.
What a wonderful endorsement for Dr. Tuchman. I am so glad that you feel at ease with him and that the wedding will go off without a hitch.
Hi BJ - I had a SCT in Sept 2014 so I am now in my 7th month and doing well. I had chemo for about 4 months prior to the SCT and it put me in remission. The first set of chem went pretty well. I would do it on Thursday and work from home Friday just in case I experienced any side effects. It was mostly going to the bathroom and just being tired but compared to others I thought I did pretty well. The drugs work differently with all so it's hard to say. What I will tell you is to make sure you are eating healthy and try to exercise regularly even if it's just walking to keep your lungs strong. On chemo day i would start off with a light breakfast egg white omelet with spinach and tomato and a pinch of cheese and avocado. Then before the chemo I would have some 21 grain toast with almond butter and a banana. I would bring peanut butter crackers (have on hand) and a yogurt with fresh fruits; large water to chemo. I didn't do sweets - many do though. If you can stay in front of the nasusa (sp) do it. The SCT was much the same way but the chemo they hit me with was much harder. Knowing I would lose my hair I just decided to shave it at that point. Glad I did because I didn't think losing my hair would effect me much but it did. Now seven months it looks like a chia pet. very curly and gray! The SCT in itself is not painful at all. It's really pretty interesting and you get to watch it. The after effects can be pretty hard but you will have a wonderful team that will walk you through everything and tell you exactly what to do to avoid the nasusa. I could share a lot more but it's getting late but message me if you want to know anything else. I am in Seattle WA. Take care and good luck!
Hi BJ,
My story is very similar to JerzieGirl's reply. I am 2 and 1/3 years post-SCT and I have been doing very well. I had 20 velcade injections prior to the SCT and did well. I found it better to eat a very low fat diet during the treatment weeks or I had GI issues. I was tired but managed to work through the whole process with just a few days of working from home here and there. The SCT chemo was a lot harder--more nausea, hair loss, and cell loss. I also got C-diff. but after a few weeks, the problems were mostly gone (except for the baldness) and I began to feel much better. I worked from home a few weeks after SCT and went back to my office a little more than 2 months after SCT. It could have been earlier but I live on the East Coast and this all took place during the winder and flu season. So, we had to be more cautious.
I have been very well ever since. I hit clinical remission and the light chains remained low for quite awhile. They have risen too much at this point and I need to return to chemo in the next month or so. to bring them back down. I will be returning to velcade--I handled it before and can certainly do so, again.
BJ, this disease is manageable as long as we stay on top of things and make sure we take advantage of any treatments that work for us. I have found that the trust I have in my doctor is extremely important and the strong relationship we have developed is essential to my staying healthy and alive.
Please let me know if you have any questions. Good luck!