[MaryMallon]

Am I just being an overly neurotic wife?

by MaryMallon on Sun Mar 29, 2015 11:33 am

Hi.

My husband is 57 and was diagnosed with multiple myeloma last April. We found it when he was having rib pain and discovered he had a rib fracture. One test led to another, and we found he had multiple lytic lesions on his spine, ribs, skull, pelvis and femur.

He had a large tumor on his pelvis radiated at the onset. He started on the induction therapy and was on that all summer. He started having trouble with his teeth which ended up post­poning his stem cell harvesting - finally had the stem cells harvested near the end of October down at the Hospital of the University of Pennsylvania (HUP).

During the month of November, he continued with teeth problems and then his back started hurting. Further testing showed that he actually had a plasmacytoma on his gum (causing the mouth problems) AND a large tumor was wrapped around his thoracic spine.

He was admitted locally to Lehigh Valley Hospital the week of Thanksgiving (where, by the way he is an Internal Medicine physician!) for high dose chemo (5 straight days of 5 different chemo drugs). This treatment seemed to have calmed everything down and, at this point, we were just waiting for the beginning of January when he was to be admitted down at HUP for the transplant.

He was admitted to HUP on New Year's Eve and started the melphalan that night. He was down at HUP for 3 weeks and finally discharged near the end of January. He had a very rough time after the transplant (does anyone really have a GOOD time?!) where it seemed everything that could go wrong did! He was on visiting nurse care for over a month. In that time, I had to learn how to give him IV fluids 3X a week through his PICC line. He was still suffering with horrible nausea this whole time. He ended up losing 50 lbs [23 kg] and the docs thought he was suffering from graft-versus-host-disease (GVHD) even though he had an autologous stem cell transplant.

Fast forward to now – I know,I threw a lot of info out there in a short amount of time He is due to have follow up blood work and an MRI this week to see where things are and what will be the next course of action. I am just a nervous wreck 'cause he hasn't been feeling well at all.

Should I be worried considering his track record?

Did I mention he has deletion 17!!

[Nancy Shamanna]

Re: Am I just being an overly neurotic wife?

by Nancy Shamanna on Sun Mar 29, 2015 12:27 pm

Hi Mary,

I don't think at all that you are being overly anxious, but sounds like you a just a super caregiver! Hopefully, now the first few months of treatments have been done, you and your husband will be able to relax a bit as he recovers from all that he has been through also.

Best wishes, and keep us posted if you like. There are many knowledgeable people who visit the site and may be able to help you both sort stuff out. I don't know how I could have coped without my husband, family and friends helping me during my myeloma journey.

[MaryMallon]

Re: Am I just being an overly neurotic wife?

by MaryMallon on Sun Mar 29, 2015 2:40 pm

Hi Nancy. Thank you for your response and your kind words.

It's just that my husband has been having back pain again, his gum is swollen again near one of his teeth, he's having vision problems in his one eye (very blurry), and he has this nagging little cough he can't seem to shake. So, as you can see, I'm about ready to jump out of my skin.

Could he be the one person in a billion that the stem cell transplant had absolutely no effect on?! I don't know, maybe I'm just being paranoid. It's hard putting on a happy face for him and my kids.

He's having all the tests this week - guess I just want to feel a little prepared

[Nancy Shamanna]

Re: Am I just being an overly neurotic wife?

by Nancy Shamanna on Sun Mar 29, 2015 2:55 pm

It does sound like a difficult situation, Mary, and I can see why you are both worried. You are only about 60 days out from the transplant? Usually around 100 days more testing would determine how the transplant 'worked'. I can see that you have more immediate concerns than that though and hope your medical app'ts next week go well. It's always a bit nerve wracking waiting for test results though.

I actually didn't get much change in my blood counts after the transplant (my 'M' protein was low , but was not in a complete remission). But now I think that the transplant must have helped me, along with the Velcade/Dex induction , and then the low dose Revlimid after the ASCT. hoPE that is the case for your husband too!

My back pain took a while to resolve, and it was helped by the bisphoshonate treatments too. it was a gradual process for me.

[NStewart]

Re: Am I just being an overly neurotic wife?

by NStewart on Tue Mar 31, 2015 11:31 am

Mary-

I don't think that you're being overly neurotic. The first weeks and months post transplant are hard for both the person with myeloma and for the caregiver. I think that it's probably harder on the care­giver because you are on the outside looking in. This first full set of tests will show whether things are improving, staying the same and possibly worsening some. My M-spike didn't begin to respond to the transplant for 7 months, although my other numbers were improving slowly. I had nausea for quite a long time and still, 5 years later, can't tolerate some foods.

Your husband is in good hands at Penn and at Lehigh. Between the 2 groups of doctors, they should be able to respond to any changes, good or not so good, quite quickly. Be sure to let the Penn doctor know any and all complaints / problems that your husband is experiencing. Your husband being a doctor himself may keep him from reporting what he considers to be little things. Don't let him pull that one if he tries. I found that the more vocal I am about the little, as well as the big, complaints I have, the better my overall care and monitoring have been. When I mention pain to any of my doctors, the red flag goes up because I am not one who usually complains of pain.

I hope for your husband and you that his recovery is going well and that any of the concerns each of you has is addressed to your satisfaction. I have full confidence in my Penn oncologist.

Nancy in Phila

[cindy0711]

Re: Am I just being an overly neurotic wife?

by cindy0711 on Wed Apr 01, 2015 6:33 pm

Hi, Mary,

Thank you very much for posting.

Our situations are very similar: 57-year-old husbands diagnosed last year with many lytic lesions and pathological fractures (so advanced bone disease; I'm not a physician – it is just what I feel) who both underwent an ASCT within the last 6 months who presented with rib pain and have deletion 17! Mine also underwent radiation therapy.

I am happy I found your post. I can only offer you prayers and empathy. Nancy Stewart put it won­derfully when she said we were on the outside looking in. It is a very difficult position to be in.

I also hope all goes well at your husband's follow-up appointment and will look here again if you wish to post. At the very least, we can commiserate with each other.

Cindy K