Hi Everyone,
As most of you know, I joined this site because my boyfriend was diagnosed with MM in February of this year. He has done quite well with the chemo treatments, minor side effects, which we are both greatly thankful for. He is currently on his last round of chemo and his Dr. has recommended he undergo pre-testing for stem cell collection in mid June. My boyfriend hasn't made a decision yet as to whether or not he will have a SCT. This has been quite a struggle for him and he is trying to get all the information he can to make a well informed decision.
His Dr. is a myeloma specialist in the Pittsburgh area. He has confidence in his Dr....but, his Dr. is not affiliated with one of the "well known" cancer treatment centers you typically read about when you research myeloma ( Dana Farber, Mayo Clinic, Moffit, MD Anderson, Sloan Kettering, UAMS etc. etc. ) This has left him second guessing if he were to go to one of these treatment centers would he receive other ( perhaps better ) treatment options.
I have suggested he have a consultation at one of the cutting edge treatment centers to determine if there are additional options regarding treatment to put his mind at ease and assist him in making the right decision for himself.
I feel helpless and want to see this burden lightened, as it is weighing pretty heavily on him and on me as well.
I am very interested in hearing of other's experiences with treatment. Where did you go? Do you feel you were given the best treatment options etc. ? I would appreciate any input, good experiences or bad.
Thanks,
Kim (JerseyGyrl)
Jersgyrl
You are doing exactly the right thing in terms of options exploration.
In my case, I had treatment at UAMS, though residing in Florida. I had 2 rounds of chemo similar to your boyfriend. I had excellent response as well, going into complete remission in round one, down to no trace of disease from 80% cellularity at diagnosis.
The doctor at UAMS---Dr. Barlogie, the head of the facility, believes in the 2 stem cell transplants if you can handle them as they have a lot of evidence (from having the largest database of patients over time) showing that MM is like killing a roach---step on it and keep stepping on it and really kill it. If you search around their periods for overall survival and event free survival tend to exceed those of many other institutions, if not all.
In my case, I made it through (was 42 at the time) with no real major infections or side effects---other than lots of fatigue. Led to a 9 year period of complete remission. I recently came out of it, but there are so many more tools today for dealing with relapse.
Of note, UAMS deals with SCT’s quite differently than many other facilities in that theirs are conducted totally on an outpatient basis. Thus, you avoid spending those several weeks institutionalized in the hospital. Enables you to spend time with family and also keeps your strength up much more. They have found patients doing SCT in an outpatient setting do much better. You only go inpatient if get an infection---of course, one takes pre-cautions in an outpatient setting but if in that setting prior to the SCT then you have been exposed and your body is attune to the family around you---so it really becomes about avoiding germs by strangers.
Hope some of this info helps, best of luck to your boyfriend and hopes he continues on a positive path.
Hello Jerseygyrl, it sounds like they completed the standard treatment regiment for your boyfriend, most likely he was treated with velcade, dexamethasone and maybe revlimid, they also use thiamide in stead of the revlimid(they are related). I have had many rounds of all of them except thiamide, and also had a transplant. Hershey Med center in Hershey pa is where I had the transplant done, they could only get enough stem cells for 1 transplant because of another problem I had years ago. My transplant doctor runs the show, however I only see him 2 times a year at present, I receive regular visits at Carlisle Regional cancer center with another doctor associated with Hershey. I stayed in the hospital for 2 weeks after the transplant, only because my primary care person (wife) takes care of her dad and it would have been a hardship on her as I would need blood tests daily and we lived 45 miles away. The worst thing for me was being bored, considering all the possible issues I was happy with the quiet and lack of events, I did have A chamber fribulation show up the 2nd week, about 15-20% of the patients have this happen to them, most times it goes away. The best protocol is to have tandem transplants done, this has the best long term results, however they have also found out that maintenance therapy helps greatly. I am in remission and take low dose revlimid to keep it that way, its been almost 18 months since the transplant. My doctor at Hershey is one of the leading doctors on the East Coast and what I have figured out is that Hershey and Carlisle have both been on the leading edge of things, the only thing they did not do was the dna testing. When I ask my first doctor about this and staging (retired) his answer was and I quote, what does it matter, I will use the standard treatment protocols because I know they work. You have been through enough my friend, why want something else. That has been 3 years ago, a lot has changed, things have gotten better. Myeloma treatment is gauged in trends so it can be a slow process. I have judged my treatment and the associated therapy with knowledge and education, one resource I used and still use is the myeloma beacon( myelomabeacon.com ) it is a web resource for the John Theurer Cancer Center, it lists all the newest clinical trials and their results, has editorials from many doctors and monthly articles written by patients who wish to share their stories, you must be careful about what you read and believe as there is much old information out there and it can be confuseing . If your boyfriend decides to do the transplant there are several things to know about, first the standard today is to do it as an outpantient, however you must have a caregiver. Second, they will need to do a daily blood draw as they watch your blood counts very carefully, you will become neutrapenic, no immune system, it does recover though. You will be on a special diet while your immune system is down, nothing fresh. Hershey has a Hope Lodge located close, I think most larger centers do. It is ran by the American Cancer Association, they will provide free lodging for you and him while he waits out the 2 week period and the time for stem cell collection. I had reservations about staying there, until I did (just 4 collection). It was by far one of the most powerful experiences of my life, we still keep in contact with some of the folks who were there. There was 4-5 of us being treated for MM out of maybe 10 patients. While they are giving you the chemo at the beginning(before) transplant time eat ice for 1/2 hour before, during and 1/2 hour after. LOTS OF ICE, make your mouth numb, it slows the blood circulation and reduces the risk of mouth sores. My doctor recommended this and an elderly man who stopped in at hope lodge also told me about it, it worked- not a mouth sore.
Please I wish you guys the best and do not be afraid. Have faith and
May God Bless You
Rodney
Kim, I had a SCT at Moffitt in Tampa and I am in remission. They were wonderful.
rodney said:
Hello Jerseygyrl, it sounds like they completed the standard treatment regiment for your boyfriend, most likely he was treated with velcade, dexamethasone and maybe revlimid, they also use thiamide in stead of the revlimid(they are related). I have had many rounds of all of them except thiamide, and also had a transplant. Hershey Med center in Hershey pa is where I had the transplant done, they could only get enough stem cells for 1 transplant because of another problem I had years ago. My transplant doctor runs the show, however I only see him 2 times a year at present, I receive regular visits at Carlisle Regional cancer center with another doctor associated with Hershey. I stayed in the hospital for 2 weeks after the transplant, only because my primary care person (wife) takes care of her dad and it would have been a hardship on her as I would need blood tests daily and we lived 45 miles away. The worst thing for me was being bored, considering all the possible issues I was happy with the quiet and lack of events, I did have A chamber fribulation show up the 2nd week, about 15-20% of the patients have this happen to them, most times it goes away. The best protocol is to have tandem transplants done, this has the best long term results, however they have also found out that maintenance therapy helps greatly. I am in remission and take low dose revlimid to keep it that way, its been almost 18 months since the transplant. My doctor at Hershey is one of the leading doctors on the East Coast and what I have figured out is that Hershey and Carlisle have both been on the leading edge of things, the only thing they did not do was the dna testing. When I ask my first doctor about this and staging (retired) his answer was and I quote, what does it matter, I will use the standard treatment protocols because I know they work. You have been through enough my friend, why want something else. That has been 3 years ago, a lot has changed, things have gotten better. Myeloma treatment is gauged in trends so it can be a slow process. I have judged my treatment and the associated therapy with knowledge and education, one resource I used and still use is the myeloma beacon( myelomabeacon.com ) it is a web resource for the John Theurer Cancer Center, it lists all the newest clinical trials and their results, has editorials from many doctors and monthly articles written by patients who wish to share their stories, you must be careful about what you read and believe as there is much old information out there and it can be confuseing . If your boyfriend decides to do the transplant there are several things to know about, first the standard today is to do it as an outpantient, however you must have a caregiver. Second, they will need to do a daily blood draw as they watch your blood counts very carefully, you will become neutrapenic, no immune system, it does recover though. You will be on a special diet while your immune system is down, nothing fresh. Hershey has a Hope Lodge located close, I think most larger centers do. It is ran by the American Cancer Association, they will provide free lodging for you and him while he waits out the 2 week period and the time for stem cell collection. I had reservations about staying there, until I did (just 4 collection). It was by far one of the most powerful experiences of my life, we still keep in contact with some of the folks who were there. There was 4-5 of us being treated for MM out of maybe 10 patients. While they are giving you the chemo at the beginning(before) transplant time eat ice for 1/2 hour before, during and 1/2 hour after. LOTS OF ICE, make your mouth numb, it slows the blood circulation and reduces the risk of mouth sores. My doctor recommended this and an elderly man who stopped in at hope lodge also told me about it, it worked- not a mouth sore.
Please I wish you guys the best and do not be afraid. Have faith and
May God Bless You
Rodney