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Carolg
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| Joined: | Sat Aug 1st, 2009 |
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Posted: Sat Aug 1st, 2009 07:41 pm |
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My husband was diagnosed with MM when he went for his Medicare physical 2 months ago upon turning 65.
One oncologist said it is smoldering but another who specialized in MM said stage 1. We contacted HCI and considered going there for treatment but could not see how we could afford to move there for 6 months. We are living on retirement and Social Security. Now I am having second thoughts and want to find the best treatment for the best outcome.
If treatment is done at HCI how long does a patient stay in SLC and where do they typically stay during that time? I know that some cancer hospital have housing but I haven't seen that listed for HCI.
One other question, of those that have had experience with stage I, would you treat aggressively in the beginning or would you wait?
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Chat Moderator
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Posted: Mon Aug 3rd, 2009 04:59 pm |
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Hi Carol,
The whole transplant process does take a few months, but it does not involve a continuous stay in Salt Lake City. First, we would need your husband to come to SLC for 5-6 days to get all of his testing done and have a consultation with one of our myeloma specialists.
Then you would go home and about 2-4 weeks later come back to SLC for about 18 days for induction chemo, labs, and stem cell collection.
Then you'd go home and about two weeks later he would come back to SLC for his transplant. That involves a stay of about one month.
If he has tandem (two back-to-back) transplants, he would go home for about 2 months after the first transplant and then come back for another month to have the second transplant.
After he has either the one or two transplants depending on your situation, it's possible your husband could need to come back for consolidation chemo 6-8 weeks after the transplant is done. That takes 4 days, but not all patients have this.
Then, our patients go on a maintenance therapy program to keep the myeloma cells from coming back. This involves taking a certain combination of drugs on a given timetable at home. He will be placed either on 1 year of maintenance therapy or 2 years.
In Year 1 of maintenance therapy, he would need to come back to SLC every 3 months for 3-4 days for a check up.
In Year 2 of maintenance therapy (if this is prescribed), he would need to come back every 6 months for 3-4 days for his check up.
In our opinion, we would definitely recommend taking an aggressive approach from the start in order to give your husband a good chance at long periods of remission, a longer life, and an overall better quality of life. If you treat the cancer aggressively at the beginning, the myeloma cells will be caught off guard by the treatment so the treatment will be effective.
If you take the approach of starting off with less aggressive treatment and only moving to more aggressive treatment if the cancer gets worse, the myeloma cells have in the meantime grown smarter. The myeloma cells sense that you've been trying to get rid of them, and they have the time to grow resistant to treatment. Treatment will therefore ultimately be less effective.
Please let us know if you have any other questions.
Take care and all the best to you and your husband. We're here to help in any way we can.
Chat Moderator
Myeloma Program at Huntsman Cancer Institute
Last edited on Mon Aug 3rd, 2009 07:44 pm by Chat Moderator
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Chat Moderator
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Posted: Mon Aug 3rd, 2009 05:05 pm |
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Hi again,
I forgot to answer your question about housing. Our patients stay in a hotel or extended-stay facility. There are some places in the area that offer a discount to our myeloma patients.
You can find more information here:
http://www.huntsmancancer.org/groups/myeloma/lodging.html
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Carolg
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Posted: Wed Aug 5th, 2009 02:03 pm |
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Once he has the initial evaluation would waiting 2-3 months to begin treatment be that critical? Because he is on Medicare he can only have one transplant
Also, How sick will he be after treatment. Would he have to be kept away from everyone in case we were staying with relatives in their home?
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Chat Moderator
Administrator
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Posted: Wed Aug 5th, 2009 06:16 pm |
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Hi Carol,
2-3 months would very likely be just fine unless the doctors find something that would require him to begin treatment immediately.
Your husband can expect to feel poorly for about 7 days after transplant or until engraftment starts. This may be a little longer if he is hospitalized for an infection or other post-transplant complication. The worst days are usually days 5, 6, and 7 after transplantation. As his blood counts come up, he will begin to feel better.
During these 7 days, side effects related to the high-dose chemotherapy are mainly severe diarrhea and also loss of appetite, nausea, and vomiting. There are medications to help with that, and some patients do not have as much trouble with this as others.
One of the most severe side effects of the chemotherapy used to be sores in the mouth, caused by Melphalan. We now know that we can mitigate that complication by giving patients ice in their mouth while the Melphalan is infusing, but some patients still struggle with mouth sores.
It usually takes people about 6-8 weeks to feel back to normal. Your husband will likely feel pretty tired for a few weeks. It’s important that, even if he feels fatigued, your husband tries to get up and do a little bit of exercise. Exercise can decrease the chance of cancer-related fatigue, help the body recover, keep muscles from losing strength, improve mood, and combat insomnia.
You can certainly stay with relatives, but measures will need to be taken to prevent your husband from getting an infection, which can easily occur since your husband’s immune system will be vulnerable. He’ll need to wear a mask to go out in public, wash his hands frequently, keep his home environment sanitized, and stay away from anyone who is sick. He’ll also need to eat certain foods that decrease the risk of food-borne illness. We have a patient handbook that can give you detailed information on preventing infection after transplant. Your husband will need to avoid crowds for a while, but being around a few healthy adult relatives should not pose any problems.
Let me know if you have any further questions.
Chat Moderator
Myeloma Program at Huntsman Cancer Institute
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spikemedic
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| Joined: | Thu Aug 20th, 2009 |
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Posted: Thu Aug 20th, 2009 06:04 pm |
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For this Medicare physical, what are those qualifications of this medicare?
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Medical insurance
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