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Posts (78)

Sat, Jun 27 2:17pm · Help: Girlfriend has stomach cancer in Cancer

Hello @confidence234 – I see this is your first post on Mayo Connect.

Welcome to Mayo Clinic Connect, an online community where people can share experiences and ask each other questions about any health issue.
We are not medical professionals who can offer medical advice.

One of the great things with mayo Connect, is sharing with and finding other members with similar stories or situations that can be of benefit to you.
Receiving news that a loved one is entering a life changing situation is extremely difficult for all concerned.

Can you share more information at this time?

What type of cancer has she been diagnosed with?

Knowing more may allow us to suggest more specific groups for you to follow.

Thu, Jun 25 12:16pm · Does anyone have acute myelogenous leukemia (AML)? in Blood Cancers & Disorders

@claireb, A very difficult decision. I am so glad to hear that your family is OK with it.

Your daughters are really special committing to spend this time with you. You and your husband have obviously done wonderful work raising your children.

You are most welcome for the support you have received on Connect,
Take care, Please feel free to continue to reach out on Connect as you see fit.


Wed, Jun 17 7:52pm · Does anyone have acute myelogenous leukemia (AML)? in Blood Cancers & Disorders

Hello @claireb

I did not have AML, my cancer was Large B cell Lymphoma that in the end had to be treated using Car T therapy.

I was 62 years old when diagnosed. I did spend about 1 week in isolation when receiving one type of Chemotherapy, so not as long as one would be isolated if receiving a transplant for instance.

Chemotherapy can be tough, but as Lori stated, it can extend life, it is so worth it.
Lori outlined some of the side effects very well. in my case, after a few treatments I became extremely tired a few days after the infusions. Nausea was not a serious side effect for me, the meds that were provided post treatment were a huge help to combat that. Bodies react differently to Chemotherapy, joint paint, muscle aches, rashes can all be side effects of cancer treatment. Of note, it could be the associated medications that contribute to some of the side effects.

I had no interest in eating which was really hard on my wife not knowing what to make, I found small servings was best, also it is OK to just have cottage cheese some times. As difficult as it was getting daily exercise was critical, I feel to this day, if I had not been in great physical and mental shape prior the the diagnosis, I would not be here today.

Receiving the diagnosis is difficult, there are in many cases a lot of options for treatment, the success rates are better all the time.

I understand your appointment is tomorrow, I would suggest when attending the meeting, use the mindset that no question is a silly question, they are all important to your husband and to you.

If you are willing, let us know how things go for you tomorrow.

Feel free to reach out at any time.

All the best tomorrow.


Fri, Jun 12 4:51pm · CAR-T Cell Therapy: Introduce yourself and connect with others in CAR-T Cell Therapy

Hello @sunnyd – Dana,

I am so glad to hear that your mother made it home. That is exciting.
There is nothing more comforting than finally getting some news that a treatment is actually working.

I concur the treatment does work, like your mom, I had involvement in the brain as well.

I am so glad you were finally able to address your Dad properly, that must be a relief, though very difficult.

I want to encourage you to continue to reach out on Connect as you see fit.

If, you feel your mom may be looking for some help that you feel can be provided on connect, have her post as well. There are a lot of different groups that she may be able to gain a measure of comfort from.

Thank you for your wishes, take care and be safe.

Fri, Jun 12 4:36pm · CAR-T cell Therapy: Joint and muscle pain in CAR-T Cell Therapy

Hello @rgerson56 – I see this is your first post on Mayo Connect.

Welcome to Mayo Clinic Connect, an online community where people can share experiences and ask each other questions about any health issue.
We're not medical professionals who can offer medical advice.

I see your expectation is to undergo Car T Cell Therapy in the future.
I want to invite you to post on the Car T site, as you may be more apt to get the information you are looking for from those that follow that group. I also encourage you to ask questions as you see fit. Hopefully someone will have the first hand information you are looking for.

Will your treatment be soon?

From which Health Care Center will you be receiving treatment?

Stay well and reach out at any time.

Fri, Jun 5 12:55pm · Hodgkin's lymphoma and itching and other side effects in Blood Cancers & Disorders

Hello @niki101 I did encounter a bout of itching after treatment, (Non Hodgkin's) I was taking a few medications during and post therapy. Once medication was discontinued, the itching resolved itself. We assume in my case this was from prolonged use to something, though not 100% sure what. (anti viral we think)

One side effect that you did not mention is numbness in the feet, which if I remember for me, started after a few treatments. I still have that side effect to this day, though it has much improved over time. It has been nearly two years since my last Chemo treatment.

Sorry I cannot be of more help.

Please continue to reach out on Mayo Clinic Connect as you feel the need. There are many on Connect that may be able to help you and or your mom in many different ways.

Take care and all the best to you and your Mom as you navigate what I know is a difficult path.

Fri, Jun 5 10:52am · Transplant housing in Rochester in Transplants

@lakegirl409, We were fortunate to have stayed at GOL on three occasions. (longest for 7 weeks) Without exception we found GOL to be everything they advertised and more. Like Rosemary mentioned, the fact that you find yourself among others who for the most part are in the same circumstances as you, is very helpful to help recuperate. Only a few blocks away from most of the Mayo facilities is also a blessing, on the days you may not be able to walk to appointments (or want to) the shuttle services are great. I know with me, eating was particularly difficult, the ability for my care givers to cook what I was most inclined to eat was beneficial.
A lot of semi private space like TV rooms, reading rooms.
Clients seemed to adhere to the cleaning regimen which is critical to transplant recipients.

I absolutely endorse Gift Of Life Transplant House.

Thu, Jun 4 6:34am · TPN IV Nutrition? in Blood Cancers & Disorders

Hello @bocajoes

Thank you for the reply.

I cannot imagine some of the frustration you went through in dealing with your mothers care. I am sure it must have been extremely difficult when it seemed not all actions were being taken.

I do hope, at some point you can feel that you did your best to get her the health care you felt she deserved.
As a parent myself, I would take comfort in knowing that my child stood up for me and took my best interests to heart, which it appears you very much did.

Do take care.